Stella and Sam

Guest blog by Theresa Miloseski, mum to Stella and Sam, as shared at the Tiny Sparks WA 2015 Gala Dinner

Good evening.  I am honored to share some of our journey with you.  Robert and I are no strangers to the awfulness of trying to conceive.  We were overjoyed when our final IVF attempt was successful in a pregnancy lasting beyond the first trimester.  Our 20 week scan was perfect so we were a little unsure as to the discomfort I experienced one night in March 2012 – back pain and a bit of a leaky bladder –but hey, that’s normal isn’t it??

 I went to work the next day and placed a call to my Obstetrician.  I was busy doing board papers for the Board meeting but he asked me to call through for a quick check up.  I never did get to finish those Board Papers.  I arrived at my Obstetricians and after a brief examination, he broke the news that my membranes had ruptured and I was about 4 cms dilated. I had never heard of the term P-PROM and so it was not on my radar at all.   He explained he was going to call an ambulance to take me to King Edwards. I was 22 weeks pregnant.  I asked the midwife, what her chances of surviving were, she shook her head and told me how sorry she was but she wouldn’t survive if born now.  We were expecting a baby girl you see, we had already named her Stella.  I called Robert and tried to tell him what was going on but I couldn’t speak through the tears so I handed my phone to the midwife who filled him in and asked him to make his way to King Edward Memorial Hospital immediately. 

Outside I could hear sirens, not surprising as we were opposite St John of God Hospital, I had no idea that the urgency of those sirens was for me.  My Obstetrican had rang ahead and spoken one of the Neonatal Doctors and advised him of my impending arrival.  I was taken into the Labour and Delivery Ward and assigned a small Observation Room.  Robert arrived and we waited.  I had no idea if Stella was alive or not. 

Two neonatal doctors arrived to talk to us about our options.  They spoke to us both at length about the mortality rate for premature babies beyond 23 weeks and what we can expect if we do give birth so very prematurely.  Our aim was to get me to 24 weeks…23 weeks if necessary.  Questions were asked, answers were given.  There was nothing rosy about giving birth this early.  I’m not sure if we were to make the decision there and then but we all agreed to aim for 24 weeks.  One of the Neonatal Doctors discussed loosely with us the possibility of intervening say if she was born at 22+5 weeks and looking viable. Our heads were spinning.  We had so much information to process and think through.  I think Stella was listening.   I let Robert deal with telling our families.  I couldn’t face it without breaking down.

The next morning my Obstetrician came to check me over and realised no scan had been done, so I was raced off for an Ultrasound.  My heart was in my mouth but the scan revealed that Stella was not only still alive but still surrounded by fluid, which meant that I had not lost all of my amniotic fluid.  Our happiness at this news was short lived when I was faced with the inevitable task of choosing an outfit for Stella should she be born in the next couple of days.  The outfit I was choosing was for photos of her and what she would be buried in should she pass away.  How do you choose an outfit that you will be burying your child in?  How?  I don’t know.  I finally chose one and it was allocated to a cupboard next to my bed.  Dolls clothes, we were going to be burying our daughter in Dolls clothes.

The days merged into one of bedrest.  I was very sick with an infection of my waters.   Four days after my admission, my waters broke fully and my Obstetrician was called. I remember saying to the nurse if she is born tonight to please, please tell them that we want her resuscitated.  I was given a steroid injection for Stella’s lungs and we got through a very sleepless night.  My Ob came to see me first thing in the morning.  Another scan was done and Stella was still alive although she now had no fluid surrounding her.  Another injection of steroids was given and my Ob disappeared for the morning and came back around lunchtime to induce me and in that time we were waiting to have her the Neonatal team arrived to set up the bed that Stella would be placed on immediately after her birth.  They disappeared for a while but came back closer to the time of delivery.   

Stella, just born

Our beautiful daughter Stella Arielle was born at 6.13pm on Monday 19th March 2012 at 22 weeks, 5 days gestation, weighing 440 grams which is about the weight of a can of baked beans and was 27cms in length, with a head circumference of 19cms.  She was handed to the Neonatal Doctor and he worked his magic on her by hooking her up to the much needed life support equipment.   I asked Robert to take photos, lots of them as we had no idea what was going to happen with Stella.  He ended up handing the camera to one of the nurses so she could take those first precious photos after she was born.   She was like a little tiny doll, transluscent with her eyes still fused shut.  The Neonatal Dr stopped very briefly and allowed me to see her before they took her to the NICU with Robert following.

Robert made his way back to me eventually and with the help of a nurse, cleaned me up.  I was able to have my first shower in 5 days.  We both tried to process what had happened.  We had no crystal ball, so we had no idea of what to expect, but we didn’t expect what was about to happen next. 

Just a few short hours later the same Dr who was at her delivery and another of his colleagues came into our room and basically said I’m so sorry, we have done everything we can but it’s not looking good, we don’t think she is going to make it.  Do you want to get her Baptized because if you do, we can organise our Chaplain to come now.  I couldn’t stop crying.  I managed to indicate to Robert to call our Parish Priest Fr Joe who was not far away at St Josephs in Subiaco.  Rob placed a couple of calls to my family and his family to update them and the prayer circle for Stella began there and then. 

I was put in a wheelchair and made my first trip down to the NICU to see our baby girl and to spend what we thought would be our last time with her.  She was covered in plastic.  I didn’t like the plastic. How can she breathe in plastic? I was panicking and was insistent to the nurse that she couldn’t breathe and she needs to take the plastic of.  The nurse was trying to reassure me that the plastic was keeping her warm and she was breathing because she was ventilated through the mouth. 

Fr Joe arrived and I calmed down.  We baptized Stella there and then. We must have looked a slightly odd sight all crowded around her isolette as he gently baptized her with a cotton bud dipped in Holy Water.  We were told to take it hour by hour. We eventually made our way back to our room and spent a sleepless night waiting for the bad news to come.  But it didn’t…and morning came around and we went to see our very sick little baby girl still fighting, minute by minute, hour by hour.  We were told that she was writing the book, this was a first for them and so she was dictating the story. 

We kept on putting one foot in front of the other and spending as much time as we could with her.  Our life became routine.  There was no improvement, there was weight loss, blood transfusions – 2 in the first week she was born and regularly thereonin, there was a nasty open sepsis wound on her back which will be one of many scars on her body in the time to come.  Her foot was squeezed daily for drops of blood from the heel pricks that they do to test her levels.  She was in a critical condition.

A couple of weeks after she was born we were ushered into a windowless room outside the glass doors of the NICU where we were told once again that they couldn’t do much more for her.  She was on maximum ventilation and her lungs were just not coping.  Did we want to leave her to slip away peacefully as she was or did we want to try her with Dexamethazone to try wean her off the ventilation she was on.  The steroids had no guarantees of working and would more than likely come with horrible side effects which would affect her later on in life, if she did indeed live.  We chose the steroids.

That night I spoke to her for hours. I told her that if it was too much for her and she was too tired to fight, that we loved her and it was ok to go. She would be the brightest star in the sky and our heavenly angel.  I told her that the Baby Jesus was with her and I gave her permission to stop fighting.  Every time I mentioned this, her oxygen saturation level on he monitor would rise.  The nurse told me to keep talking to her about whatever it was that I was talking to her about as it was working.  She survived the night.  Hour by hour, day by day. 

Stella 5 weeks old, our first cuddle

Three weeks of Dexamethazone and she was eventually weaned of the HFO and Nitric to CPAP.  38 days after she was born and weighing 530 grams we finally got to hold Stella for the first time.  Prior to that, she was simply not well enough.  I was so scared I was going to hold her too tight. I cannot describe the feeling of holding her, possibly one of the best days of my life.  I felt like a Mother, I hadn’t felt like a Mother up until that point, you see.  We weren’t allowed to hold her for a lengthy period of time because it was using up all her energy but that first cuddle was the start of many more to come.

Stellas stay in the NICU included Anaemia, Jaundice, Sepsis, eight blood transfusions, Golden Staph, Lumbar Punctures, multiple medications for all the infections she was fighting, Daily heel pricks, head scans, heart scans, eyetests for ROP of which she had Stage 1 and more.  Stella was in hospital for 153 days in total.  She left hospital oxygen free but with a condition called Chronic Lung Disease due to the long time she was ventilated.  This has seen her admitted to hospital for oxygen support many times over the past 3 years.  I cannot praise enough or thank enough the absolutely amazing team at King Edwards for quite simply saving Stella’s life.  I am eternally grateful.

During our time in the NICU, we were made aware of some support groups specifically for families of premature babies.  We were given details of websites to peruse in the hope that we could make sense of what was happening on our NICU journey.  I was very privileged to have met some of the Founding Members of Tiny Sparks through one of these support groups and their support and friendship was immediately welcomed by Robert and myself.  We are all blessed to have these wonderful families doing the good that they do.

The NICU journey is so very hard, it’s painful, it’s frightening, overwhelming, lonely and can quite honestly do your head in.  Tiny Sparks are the kind of support group you do want to have by your side on this journey.  I honestly wish they had been around when we were going through our NICU journey.  The packages that they provide to not only those currently journeying through the NICU but to those on bedrest are essential.  Their online support pages and quick response are reassuring to the many men and women who are facing their own journey.  Thank you Tiny Sparks.

These ladies were amongst the very same group of friends I called on when I found out I was spontaneously pregnant with my second child only a couple of short months after Stella came home from hospital.   Our joy at being pregnant was quickly filled with fear.  I would wish no-one to go through what we had gone through with Stella. We were one of the lucky ones because we got to bring Stella home with us, many don’t.  How could we survive going through this pregnancy given my history?  Age was a factor, I had Stella at 43 and I had a couple of months ago turned 44, so having another baby was not on our radar.  I sought an immediate appointment with my Obstetrician who was very shocked and cautious.  We decided that we would wait and see if I could sustain the first trimester.  He suggested progesterone pessaries if I do last the first trimester.  We survived the first trimester and so with daily progesterone and regular scans I made it to 17 weeks before I had surgery for the placement of a cervical suture. 

I was under house arrest with the instructions to not do too much, no lifting, straining, or anything that could jeopordise my pregnancy.  It was very hard to keep to the rules as I had a very active crawling Stella to entertain.  Regular support check ups by the Tiny Sparks ladies kept my spirits high.  Tiny Sparks was being formed during this time.  At the 20 week scan we found out we were expecting a boy.  The stitch was holding well and the progesterone was doing its job!  It was a hard pregnancy to get through.  I was filled with fear every single day that our beautiful boy would come early. 

Sam just born and cuddles straight away

I am very grateful for the support we received from the premmie community that surrounded us.  Samuel Robert was born on 19th June 2013 via caeserian section at 36 weeks 6 days gestation and weighing 2.8 kilos.   I can’t tell you what it was like to feel like a real Mum, in hospital with her baby by her side. It was just the best feeling.

Stella and Sam growing up together

I would never have made it to 36 weeks with Sam if I hadn’t had the daily progesterone or the cervical stitch.  We are so thankful that the incredible team at WIRF are leading the way with the initiative of preventing preterm birth in the Whole Nine Months.  I would never wish anyone to go through the NICU journey.  It was without a doubt the hardest experience that Robert and I have ever faced in our lives.  That said, if it wasn’t for our journey we would never have met so many incredible people, most of whom I happily call our good friends… eg. Jackson is a little ex 26 weeker who was next to Stella in the NICU from when he was born for a few months.  Side by side they used to cheer each other on.  Three years on and their bond is unbreakable, as is our bond with his parents. Our tiny sparks come in varying degrees of gestational age and sickness.  No one baby is more precious than the other. They are all special, they are all fighters. 

Robert and I 100% support the Tiny Sparks community and the prevention of preterm birth through WIRF and I hope that you all support them to. You never know when you or someone you love will need their support. Thank you for letting me share some of our story with you.

Losing Ryker

Guest blogger Dneika shares her story of loss.
Trigger warning: If you have experienced a pregnancy loss, support is available. Please see the bottom of this blog for relevant organisations.

Most parent's can remember they day they were told their child or baby never made it. They day they are told their child is dead. 

“Look at me,” I remember those words clearly. My midwife kept repeating them to me as I was being prepped for an emergency c-section. I was being poked and prodded by at least 6 different people; one person putting an IV in, one doctor breaking my waters, a midwife undressing me, another midwife watching my stats, my normal doctor rushing from his practice next door to read to me and make me sign all the paperwork to go into surgery. All this and the main thing I remember is “Look at me.” All she was doing was holding my hand and telling me to look at her. You see all this fuss was happening because my son’s heart beat had dropped drastically.

I didn’t know at the time something horrible that I wouldn’t wish upon my worst enemy was about to happen.  I was rushed to the other side of the hospital (yet I have no recollection of this except little bits and pieces) and put under (general anaesthetic). I remember my anaesthesiologist telling me to just breathe and then it’s all nothing. My son was delivered not breathing. And all this took a mere 14 minutes.

My mother-in-laws were there with me as my partner was at work, they were the unfortunate ones that had to call my parent’s across the country to tell them that I had had an emergency c-section and that their Grandson did not make it. I’ve heard all the stories of how each of my family got told that Ryker never made it. My older sister was bathing her daughter (who is 3 months and 1 day older than my Ryker) and nearly dropped her. My younger sister was staying at my older sister’s house and had to take my niece off my other sister, and they cried together. My mum and dad didn’t answer the first phone calls from my mother-in-laws and I think they regret that nearly every day. My younger brother was so silent I think my mother was deeply worried about him (he is the loudest person in the room), and then my baby brother, he's still so young only in primary school, my parents didn’t know how to tell him. They told him the day before my mum, older sister and niece flew across the country to be with me.

My partner doesn’t remember his trip to the hospital to this day. He has no recollection of it at all. He remembers seeing my doctor at the elevator waiting for him and him looking down. His told me that’s when he knew something was wrong. They rode the elevator up to where his mother’s were and my doctor told him what happened.

And then there was me. I was still drugged up, I don’t remember my doctors talking to me, but I remember them telling me he didn’t make it. I don’t remember holding my son for the first time. I don’t remember my family surrounding us, I don’t remember my brother-in-law making a joke that Ryker could be his (they have the same hair). All I remember is that they told me that my son didn’t make it, my partner told me they had to tell me more than once because I was not with it at all.

I may not remember the details, but I do remember the pain. I remember the pain because I feel the pain every day. I have felt the pain every day since my son hasn’t been here. But what did make it easier? My midwives, my doctors, my family and my strength, one midwife in particular made a difference. The one who was telling me to look at her; she became my main midwife for my 4 day stay at the hospital.

El was a beautiful woman who comforted me when I needed it, who just sat there when I needed. Who treated my son with respect and dignity that he deserved. She bathed him for me when I couldn’t get out of bed, she brought him to me when I wanted him, and she let Ryker stay with me. She in some way was my life saviour, from “Look at me” to “Call me anytime you need me”.  El made all the difference.

I stayed at the hospital for 4 days. I spent 4 days with my son. It was not nearly enough time. My mum, sister and niece arrived on the 3rd day and spent the 4th with me, Ryker and our family. We said our goodbyes on that unforgiving day. I went home to plan a funeral, when I should have gone home with a newborn baby.

We received flowers everywhere, but in a lot of ways I didn’t want the flowers. I didn’t want to be bent over in pain. I didn’t want my baby’s stuff in his room shut up. I wanted my baby; I wanted a happy beautiful baby. But I didn’t get what I wanted. I didn’t get what I needed. I got what I was given.

Not long after we had to hold a funeral for my son. 

The funeral of a baby is never easy to attend, but then imagine it’s your baby. It’s your baby’s funeral.  Tuesday 3rd February 2015 I went through the ordeal of my son’s funeral.  Before the ‘event’ happened we had to plan his funeral. We had luck finding a funeral director that specialised in infant death. He was a very kind and informative man; I guess he needed to be with what his job was. He asked Tim and I how we wanted the funeral and what we wanted. And to be honest Ryker had a very simple funeral. There was no big sha boom, it was simple and bright. We had asked all those that were attending to wear bright coloured clothing as I don’t see an infants funeral to be dark and gloomy. But to be filled with joy and light, for everything they could be. Why taint something so perfect with something so dark? You wouldn't want to kill a flower or butterfly with pesticide.

We saw Ryker before the funeral at a little funeral home; he was dressed in his finest ‘suit’. We had bought it before we had given birth so it seemed fitting that he wore something that was purchased with love. He had his little socks on and a little blue tie. I can remember him as clearly as someone standing before me, I regret not having photo’s taken of him at the funeral, because it would be the last time any of our family would see his sweet little face.  The last time to cuddle, to just look, to look at the perfect little creature we made. Because that is what he was; perfect, eternal and simply lovely.

As a family; my partner Tim, mother, sister, niece, mother-in-laws, brother-in-law and a family friend we said our private goodbyes before heading to the cemetery. We had a small ceremony at the Infant’s Butterfly Garden at Karrakatta; those that attended were welcomed and supportive. They were what we needed on the day, not to be alone but to be loved by those who would. We lit a candle for Ryker, had poems read aloud and had a beautiful balloon release at the end of the ceremony. The ceremony itself was small and intimate; and I would not of changed a thing except to have my family from Queensland attended (my father and younger siblings could not attend).

I have never said this was my grief alone, I know every one of my family and friends have felt my grief in one way or another. Even if it was for a fleeting moment, they felt it. I can completely understand that they too hurt. But I am selfish. I am and will always put mine and my partner’s grief before theirs. I will not dwindle our grief to console others. As harsh as it may seem, their grief will not match our grief.

My little boy was cremated and a day later my partner and I went back to the Infant Butterfly Garden to 'collect' his urn. To bring our boy home for the first time. For the rest of my life I will tell you that was not the way I was meant to bring home my son.  He was meant to come home in a car seat. Something they never tell you when you cremate is that they give you a certificate to basically say what is inside the little urn. Maybe they do tell you, and maybe I was too out of it when I was told. But that was one of the little shocks I got when I bought my little boy home.

Regrettably writing about Ryker’s funeral I must inform you that on the day, there was no ‘Aha’ moment, no butterfly to console me, no beam of light, I didn't feel my son near and that there was no happily ever after. I felt relief and a weight off my shoulders.  People tend to think that once the funeral has come and gone that everything will go back to normal. It will for everyone else, but unluckily it won’t for us.

While many parent’s have said the funeral of their child was as nice as a child’s funeral could be, there really is something special about attending a child’s funeral. They are heart breaking beautiful and something you really do not want to attend. 

We had to wait what felt like years to get the results from Ryker’s autopsy. But we finally did.

11 March 2015, you would think my baby brother’s 18th Birthday would be one of pure celebration, and it would of been had I not expected to get my autopsy results back on the same day. I had wanted to call him. My appointment wasn't until 3pm, but I felt guilty, I didn't want to bring down his day. So I didn't call, I was selfish. I didn't want any of my family to be upset on my brother’s special day.

Tap, tap, tap, tap my foot and the vinyl floor of KEMH (King Edward Memorial Hospital) seemed to have a rare connection that I couldn't keep them apart. Maybe it was something to concentrate on maybe it was boredom, or just maybe it was to pass the time away. Somehow I think it was a mixture of the three.

I had been squeezing Tim’s hand since we had been picked up by his Mum’s; the nerves had kicked in before we left the house. We were on one of our final ‘adventures’ to finding out what had gone wrong with our little boy, and why he had died before he had been birthed. I don’t know if you have ever been in this predicament or how your hospital handles it, but at KEMH you get to the main entrance head down a hallway labelled ‘West Wing’, it’s not a long hallway but it’s got pretty hand craft pictures on the walls, most likely created by the young children staying at the KEMH. When you reach the end of the hallway, you get a receptionist or as the clinic itself is called Perinatal Loss Services; this lady will point out a seating area specifically for parents with similar circumstances.

In this special waiting room was two other couples, and they looked as nervous as us. One of the couples reminded me why we needed to be strong for one another, as they looked so disconnected from each other that it reminds you that not every couple can deal with the pressure of losing a child.

We waited, and then waited some more and then finally we got shown to a room.

We first went through my results; I was a perfectly, unremarkably fine. Nothing showed up in any of my extensive blood tests. I had normal glycated haemoglobin, normal thyroid function, negative TORCH screen and all bloods associated with pre-eclamptic changes were normal. My thrombophilia screen was negative and my acquired thrombophilia screen showed a decreased protein S which is most likely consistent with pregnancy and interesting an elevated protein C. Nothing out of the ordinary.

We then went through the events of the day when Ryker was born, the Doctor asked me to explain in my own way what had happened. I don’t think I need to repeat what happened. Then we got to the part we had come for. What was wrong with my boy?

The post mortem examination of Ryker showed a slightly small baby, but what was more noticeable was an extremely small placenta at only 310gm and significant placenta infarction with areas of avascular villi and thrombosis in the chronic vessels, in English that all means that Ryker had blood clots to 5% of his placenta and that a 'normal' placenta size is anywhere between 500-600gm, and that his placenta had started to die. There was no evidence of infection. The small placenta was sadly unable to support Ryker through labour.

The specialist doctor then explained that the most likely cause of all this was that I had MTHFR gene (a blood clotting gene) which can be associated with hyperhomocysteinemia and thrombophilia.  I was asked to go and get gene testing done the next day.  And if my results come back positive for MTHFR, then my partner Tim would also be getting check as the combination of an abnormality on both sides can lead to fetal thrombophilia which can explain the thrombosis in the fetal vessels seen in my placenta.

After all this explaining and question asking of what could of caused it all and could it be detected earlier, and if so what would that mean. I got a shocking answer. My son was never really going to make it, and if he had he would have been severely brain damaged with a likely chance of Cerebral Palsy. Because through all that mumbo jumbo above I forgot to explain one main thing, Ryker was never getting enough oxygen to his brain and that my placenta didn't fully attach to me. In some ways Ryker passing is a blessing in disguise, that doesn't mean I don’t love him and that I wouldn't have loved him had he survived. Because I would have put my life on hold to care for that little boy, what I mean by blessing is that he isn't suffering now. He feels no pain. That is my one silver lining in my whole journey, is that my son is not suffering from something that nobody could have stopped.

The conversation then turned towards a different topic; the next pregnancy, whether or not Tim and I would try again, and how soon or how far away. 

I found out that my next pregnancy I have been advised that I should wait 6 months after my c-section to try again (TTC) so around July if want too, my pregnancy would also be High Risk and the amount of drugs I will be taking through the pregnancy is astonishing, here are just some; High dose of Folate at 5mg a day, Pyridoxine 100mg a day, Clexane injections (blood thinners), baby Aspirin and the usual pregnancy vitamins, as well if needed I will have to go back onto Labetalol (High blood pressure Tablets, I had to take them through Ryker’s pregnancy) at 100mg.  And then there are the extra ultrasounds (after the first trimester they will be every 2 weeks) and also throughout the pregnancy they will take samples of the cord blood which is basically a nice big needle in the stomach. I have also been advised it would be best to schedule a c-section between 37 and 38 weeks.

So all in all, Rykers autopsy results came back with something. That is more than some parent’s get. We were prepared for no answers and I think that is what helped the most. We were told that most stillbirths go unexplained. I am one of the very few lucky ones that have a reason that their child is not with them, I am thankful for that at least, I have some closure while some have nothing. My heart breaks for those who are told there was no reason or that they had a perfectly normal baby, I don't know how I would cope knowing that my baby was perfect in every way except that he isn't here with us.

It's been nearly 6 months from that day, I have moved forward, but I have not moved on, some days feel harder than the first few days, some days I just think of all the things I should be expierencing with my first born, but now I just daydream and try and forget the pain of never holding my son in my arms. 

It is important to know that there is support in place for families who are grieving.  The following organisations may be of assistance:

Heartfelt

(from their website) Heartfelt is a volunteer organisation of professional photographers from all over Australia dedicated to giving the gift of photographic memories to families that have experienced stillbirths, premature births, or have children with serious and terminal illnesses.  Heartfelt is dedicated to providing this gift to families in a caring, compassionate manner.  All services are provided free of charge.

Carly Marie

CarlyMarie is a writer and artist, she knows the pain of loss and creates beautiful memories for people to cherish.  She also puts together and distributes memory boxes to hospitals in WA.

Sids and Kids

Sids and Kids have a 24 hour Bereavement Support line 1300 308 307.

Solomon's Story

Guest blogger Manda T writes of her son Solomon's Story with Congenital Diaphragmatic Hernia (CDH). See bottom of blog for a definition of CDH.

When my son was born he wasn't that lovely shade of pink. He was grey. He didn't cry. He was lifeless. And the birth suite was so quiet, you could hear a pin drop. He was born on 23rd June 2014 with Congenital Diaphragmatic Hernia (CDH). 

Finding out at our 20 week anatomy scan was a huge shock. Solomon was our 4th baby. Our previous three, all girls, were born perfectly healthy. To this day, I'm convinced his condition is my fault. Mothers guilt is an awful thing. 

An hour after Solomon was born

Glenn's daughters meeting Solomon when we were told he was on maximum support

The morning after Solomon was born his Dr stopped us in the corridor to his bed. The words "end of the line" and "maximum support" are all I can remember. Or choose to remember from that conversation. He was on the high frequency oscillator, nitric and many different medications. He didn't respond well to being touched. Cares sent him into a tizzy. The numbers went down and up, up and down. Days passed. He was no closer to being transferred for surgery. My husband and I stayed in the parents room in the NICU. Only the parents of the sickest babies stay there. 

On day 7 his doctor took a chance and switched him to the conventional ventilator and it worked! Day 8 saw him be transferred to the children's hospital. Day 10 he had his repair. 7 or so hours went by so slowly. I caught up on sleep. My husband paced the room. Thankfully all went well. His hole was so large it required a patch to close. 

The rest of our journey seems like a blur. Though at the time I just couldn't wait to have our son home. He fought so so hard to be here and stay. He is my absolute hero.

Solomon was 16 days old when he started on tube feeds. 

He was 17 days old when they switched him from the conventional ventilator to CPAP. That was also the first time we heard him cry. 

At 18 days old, we had our first cuddles. 

After 22 days, Solomon was switched to hi flow oxygen

On day 25, Solomon was transferred back to the hospital he was born at. On the way, the transfer team stopped in the corridor so he could meet his sisters for the first time. 

Being transferred to PMH

Solomon after surgery

Cuddles with Mum

Cuddles with Dad

Day 29 saw Solomon taken off all breathing support. For the first time in his life, he was breathing unassisted. 

One tube to go!

The days following were filled with trying to get him to take full bottle feeds. Easier said than done. Solomon had severe reflux and would vomit at every feed. Eventually medication helped. He started gaining weight and taking full feeds. 

On August 15th 2014, day 53, my 31st birthday, Solomon came home. He will forever be the best birthday present I will ever receive. 

In two weeks Solomon will be celebrating his first birthday. I don't know how I'm going to handle that. Feelings have a funny way of creeping up on you. I have days where I feel fantastic and days where I want to crawl into a ball and cry. I still wonder why me? Why us? Why our baby? 

First family photo - Image Credit: Samantha May Photography

Once you're the parent of a CDH baby, your life is never the same. You watch your baby fight for their lives. Literally. While the scar my son bears shows the hell he's been through, I have no physical scars from my CDH journey. Though my emotional scars are cut just as deep. You cannot go through this experience unscathed. And you won't come out the other side the same. But with the love and support from our CDH Australia family, I know I'm not alone. And that makes it just that little bit better.

Definition of CDH - Source: CDH Australia

The diaphragm is a muscle that helps us to breathe and separates the chest cavity from the abdominal cavity. It develops in early foetal life. Congenital diaphragmatic hernia is the absence of the diaphragm or, more commonly, the presence of a defect in the diaphragm. It can occur on either the left or the right side but is most common on the left (80%).

As there is a defect in the diaphragm, the abdominal contents including the stomach, intestine, liver and spleen can be displaced into the chest cavity. CDH is usually an isolated condition, although other congenital anomalies, most commonly cardiac, may be associated and influence the prognosis.

Since these organs are in the chest cavity and not where they are supposed to be, the lungs have insufficient space to grow normally and are therefore smaller than they should be. The determinants of survival include the degree of underdevelopment/undergrowth of the lung and the supplying blood vessels with associated pulmonary hypertension, as well as the gestation of the baby.

Rebecca's High-Risk Pregnancy Story

Guest Blog by Rebecca F

Rebecca and Heath - Pregnant!

Rebecca and Heath - Pregnant!

My name is Rebecca and my little miracle is Amelia (or “Millie” as she is known by many!). She was born in 2014 at 28 weeks weighing just 795 grams. I hope by sharing my story I can help more families in our community dealing with a traumatic pregnancy or birth (or both), and I believe this will be very therapeutic for me to write also.  My husband and I had been married for 2 years before we decided the time was right to start trying for a family. I was 28 and my husband was 37 at the time. What I initially thought would be a beautiful and easy experience for us turned into a very difficult and emotional road when we were still trying to conceive 5 years later. Being a little bit of a control freak, this was very hard for me to deal with, and being an early childhood teacher made it all the more difficult as I was surrounded by darling little children day in day out. IVF became the only option, and we were so excited when the day finally came – we were pregnant!

Such wonderful joy unfortunately became overridden with a number of complications throughout my pregnancy. I had a sub-chronic hematoma haemorrhage at 12 weeks that was so large I thought I'd lost the baby. To make sure we would be able to get an ultrasound that night, we had to go to SJOG Murdoch where thankfully the sonographer was already there, having been called in by another middle of the night emergency. A trip to KEMH the next day confirmed the good news that the bleeding had resolved itself and she stayed put! I was also told I had a decent size fibroid, but that it should not cause concern. The next hurdle we came across was at our 12 week scan. The ultrasound showed that our little baby looked great (measuring a little small, but fine the sonographer said), but then we got a huge shock as the blood work for Downs Syndrome came back as High Risk -  1 in 100 for Downs Syndrome and another Trisomy “Patau’s Syndrome”, a condition not conducive to life.  I was so scared, but there was something in me that said “No, not my baby, I will not accept this”. I quizzed the clinic where the bloods were sent and found out it was a low “papp-a” result and my IVF status that put us into this level of a high risk category.  I became quite obsessed with researching low “papp-a” and found out on a KEMH medical document online that it can often indicate a compromised placenta, in uterine growth restriction,  and preterm birth. So I knew in my heart, something was going to happen, but not Downs, not Patau’s. No.

Amelia at 12 weeks gestation - this was video footage and she was really moving!  We called her our little tiny dancer :-)

Amelia at 12 weeks gestation - this was video footage and she was really moving!  We called her our little tiny dancer :-)

I was advised to do an amniocentesis, but I refused, not wanting to put my baby at risk, especially if there was no need to. I made the decision myself to do the 2nd trimester blood test at 15 weeks. That test came back clear of Downs, but shockingly it also came back as our baby having a 1 in 4 chance of Spina Bifida. Once again I refused to accept these results, and questioned the test . I found out it was another placenta related blood issue I had, so I spoke with the wonderful doctors at Western Ultrasound for Women and we booked me in for a 16 week scan with an amazing specialist there. I felt immense relief when he told me my baby was absolutely fine, that he doesn’t often get such clear images and he could see she was developing perfectly.... and it’s a girl! It was such a wonderful day that I won’t ever forget.

Life just wanted to keep testing us though, and at 23 weeks, I started having regular contractions. I was advised to go straight in to KEMH for monitoring. I had a test that came back negative that I would go into labour in the next week, and the next day went to Kaleeya Hospital where I was booked to give birth, to be assessed for a plan. My husband and I went through a traumatic experience that day when we were told if I go into labour nothing could be done for my baby. Needless to say, that was not good enough and I demanded a different doctor, in fact I demanded to see the senior doctor as I was a high risk patient. I would not accept such an attitude, especially when we had come this far. I was put on medroxyprogesterone acetate pills which I was not keen on at all as my pharmacist was very uncomfortable giving it to me knowing I was pregnant, and advised it was a high risk drug. But, after having a bit of a melt-down about it, I had to trust the head obstetrician at that point as my cervix was shortening and I was told that it was vital to keep taking the pills to hold off the contractions. My baby was still measuring small, but no one seemed concerned about it, so I wasn’t either. But I still had the low “papp-a” in the back of my mind.

Rebecca's Early Baby Shower

Rebecca's Early Baby Shower

 All seemed fine from that point, I even had an early baby shower that was so lovely. I was able to enjoy my pregnancy for really the first time since all of these complications arose. That was until I was thrown another curve ball, this time a huge one. I started having some what I thought of as general pregnancy woes. At my baby shower I had tightness in my chest that I thought was nervous excitement. Then I had it again in the middle of the night that was strange. The next day I saw spots and was dizzy, but I thought it was because I was hungry and had just done the gestational diabetes test.  But then I remembered I had been very itchy and my liver results came back elevated. The GP hadn't pushed for anything to be done at the time but when I put it all together I was worried. The final indicator something was not quite right was when my feet and ankles ballooned within a couple of hours, very unusual for me. So with the push from my mum, I called the midwives at Kaleeya and drove in by myself for a quick check that night before my antenatal class while my husband was at the gym.

I was instructed to do a urine sample and then lay on the bed while the very efficient midwife took my blood pressure. She had a funny look on her face and said she would just take it again. I knew something was wrong when she wanted to check one more time. My blood pressure was 190/120 and I had 4+ protein in my urine.  The midwife looked panicked and I started to feel really scared. I was told to stay on the bed as everyone starts rushing around me. I was given the steroid injection, a cannula was inserted, and meds after meds which didn't do anything to bring my BP down. My husband was called and he rushed in and I felt better knowing I had him there with me, we were in this together. I was then taken into a labour ward with a very caring nurse who did not leave my side and they called the head of obstetrics in. It was then that I was told I had severe pre-eclampsia and suspected HELLP syndrome. I went with that same lovely nurse in an ambulance and was rushed straight up to MFAU at King Eddies. I was there overnight with the thought I may need a C Section to deliver my baby at any time. Thankfully my BP came down a bit so I was brought down to a ward early the next morning and monitored.  I was 27 weeks and 1 day.

The next day I had an ultrasound and was told my baby was measuring 24 weeks and was only 700 grams. The specialists were very concerned for me and for my baby and said we are playing a dangerous balancing game to keep me from having seizures or a stroke, and to try to grow our baby to a size that was not so extreme and fragile. I was put under the Gold Team and on complete bed rest, with a myriad of medications and injections to stave off the inevitable. I felt a bit like a pin cushion, which I should have been used to from all the years of fertility treatment! My various work commitments were cancelled, including teaching roles within the University of Notre Dame, a part time role I had started that year at a lovely little local primary school, and my musical performance schedule was wiped. I didn’t know at the time, but I would not be leaving those hospital walls before my baby was delivered. I noticed the growing intensity in the tense look on my husband’s face and saw how stressed my family were. I kept thinking, no I have to be strong. Everything is going to be ok.

The paediatricians from the NICU and special care nurseries met with me a few times, but I couldn’t really comprehend what was happening. I missed my little dogs, I missed my home and husband. I kept asking the doctors when I would be able to go home. I thought that I would somehow be able to carry on as normal when they could get my BP down and I would get back to resuming my life. I know now I was in complete denial and was only focusing on what they were telling me about the baby, and disregarding what they were trying to stress to me about my condition. Each time they said “No Rebecca, you need to know you will not be leaving here don’t you? The goal is to get you as far along as we can, but it’s like a knife edge. We have to be very careful. The only cure for pre-eclampsia is delivering the baby”. It was then I was also diagnosed with cholestasis, explaining the extreme itching in my hands and feet. As well as the severe pre-eclampsia, cholestasis can be very dangerous for the baby and it was something my GP should have realised and acted upon from my earlier elevated liver tests.

I used the time I had on bed rest in Ward 3 to read everything and anything I could get my hands on to prepare me for a premature baby. I looked for information and stories about preterm birth and stories of survivors in Western Australia in particular, the locality made me somehow feel more reassured that if those babies can make it here in Perth, then my baby can make it too. I became obsessed with researching low birth weights and gestational ages, and that was when I remembered I had actually contacted Tiny Sparks WA back at 23 weeks when I first started having those contractions. Bronwyn Rose, chairperson, was so generous with her time, and answered all my questions as best she could, and provided me with a real sense of comfort. I am a big believer in a trouble shared is a trouble halved. I contacted Bronwyn again when I was admitted to KEMH with my pre-eclampsia and she was once again a wonderful support. Over the next week I would regularly look on the Tiny Sparks WA website and Facebook page. I am so glad there is now the Tiny Sparks WA High Risk Pregnancy Support Group as an amazing support to women going through very difficult pregnancies. If we can be there for each other in such times of need, we are in some small way also validating our inner strength and understanding. Sometimes we just need to be heard, sometimes we just need to share with those who “get it”…..

Ready for a caesarian section

Ready for a caesarian section

I got progressively sicker and sicker and ended up on oxygen, unable to breathe. On Day 6 I was rushed to Charlie Gardiners via ambulance for X-rays, lung scans and a heart echo and was found to have pulmonary oedema (fluid on my lungs). I was very swollen in the face and didn’t look like myself, I started to become scared about what was happening to my body, when before I was only worried about my baby. I had become completely “out of it” by that stage and slept through all the scans and the echo, I felt so helpless, and very vulnerable. My body was starting to show signs of severe distress and my BP was rising again, not able to be brought down. By the time I went back to King Eddies I was put into a bed in ASCU (the Adult Special Care Unit) and after realising a heart attack could be a real possibility, Dr Griffin and the Gold Team made the decision to do an emergency c section immediately. My baby girl Amelia was born at 11.30pm, weighing 795 grams. She was 28 weeks on the dot.

That concludes the story of my High Risk Pregnancy. The next instalment will continue with the emergency caesarean birth and NICU journey of my baby daughter. Thank you for reading.

If you are pregnant and experiencing symptoms of pre-eclampsia please don't wait, contact a health professional immediately.

Signs to watch out for are:

  • Swelling
  • Protein in the urine
  • High blood pressure
  • Rapid weight gain caused by a significant increase in bodily fluid
  • Abdominal pain
  • Severe headaches
  • Change in reflexes
  • Reduced urine or no urine output
  • Dizziness
  • Vision changes

Her Battle Begins – Olivia’s Story (The first three weeks of NICU)

Part II of III - Part I "Code Blue - Olivia's Birth Story" can be read here

After she was born, Olivia was taken immediately to NICU and my husband (Dan) was told he could see her about 15 minutes later; it was the first update that he had received on either mine or her conditions since leaving me at the theatre doors. I often consider that to be one of the most traumatic moments of that day for either of us; I had the "benefit” of being asleep and unaware.

During the time I was in theatre when Dan was not sure what the outcome would be he had called both sets of grandparents who had both rushed in to the hospital. As per KEMH visitor policy grandparents were allowed to visit Olivia, one at a time, accompanied by Dan.

Dr Wu (my obstetrician) came to see Dan and my mother is with him at the time; they both finally get to hear that I am OK despite losing quite an amount of blood and are also told that another 10 minutes would have resulted in a very different outcome for both Olivia and me.

In the NICU Olivia had two IV lines placed through her umbilical stump and was hooked up to various monitors (to measure heart rate, oxygen saturation, blood pressure and body temperature). Dan stayed with her until approximately 9:00pm when he was told he could come and see me in recovery as I was waking up. I remember drifting in and out whilst waking and asking the nurses there if Olivia was alive and if she had cried. When Dan came in he showed me some photos and told me that the doctors had told him that she was doing well so far.

It took a little while for my blood pressure to be raised and stabilized, but once it was I was transferred back to the ward. Dan and I sat there in shock for some time before he decided to go home and get some sleep quite late that night.

Late the next morning I had my catheter removed and was able to get up for the first time. I was then able to be taken down in a wheelchair to meet Olivia for the first time (as I was under a GA I didn’t even get a glimpse in theatre). When I saw her I instantly started sobbing and telling her I was sorry, over and over. I don't think any amount of shock could have dulled the emotion of that moment, it was intense; Olivia was unimaginably tiny.

One of Olivia’s doctors came over to see me and explained a few things, including that Olivia had an open PDA channel in her heart (common for premature babies) and that ideally this would be closed before any feeds or progression could commence. I do remember asking what I needed to give consent for and what they would just do out of necessity; I felt as her mum I should have been doing something, even if it was just saying 'yes' to all of the medical team looking after her; I felt quite helpless.

Later that day it was discovered Olivia had a pneumothorax (collapsed lung) and she had an ICC drain inserted in her chest to try and resolve this (to remove the air). She was placed back on a warmer bed which was covered with cling film (literally glad wrap) whilst this resolved because the draining mechanism combined with all of the IVs and monitors she was hooked up to meant that she could not be managed in a humidicrib. She was sedated with morphine and not weighed for a few days due to her fragility. This was another set back both to being able to attempt to progress from mechanical ventilation to CPAP and for feeding, we were told.

Olivia with an ICC drain

Dan helping with the cling film

We were very uncertain about Olivia’s prognosis and celebrated her being 24 hours old, then 50 hours; every small milestone seemed like something to cherish as we weren’t sure how long she would be with us for. Although we weren’t necessarily given a prognosis to that effect, she certainly wasn’t doing as well as she could be.

On day four Olivia’s ICC drain was removed, however this only lasts a few hours before it is needed to be reinserted as the lung has again collapsed. As it is now a Monday (Olivia was born on a Friday evening) the main consultant for the fortnight sees us for the first time and discusses that Olivia may need ventilation for quite some time based on the progress with her lungs. In better news, however, he conducts a head scan that is clear for any large bleeds.

On day five after three days of ibuprofen treatment for her PDA, Olivia has a repeat heart scan that shows the PDA is now closed. She also had her ICC drain removed with success and everyone is feeling a little more positive about the situation. Based on this combination of things Olivia had her first 1mL of EBM at 6pm that evening, and tolerated it well.

I was discharged on day six and cried the entire car trip home. It was agonizing to think that I wouldn’t be under the same roof as Olivia and that I was leaving her behind. I called the NICU three times within the first few hours of being home! Those first few weeks I cried often and at so many triggers… seeing a mother with her healthy full term baby, seeing a heavily pregnant woman, seeing Olivia struggle… everything had me in tears, which those close to me will know is not a common occurrence. The trauma of the NICU experience should never be underestimated, even for the most stoic of mothers.

On day seven Olivia is trialed off the mechanical ventilator and on CPAP for the first time, she only lasted a few hours before needing to be re-intubated. It was not entirely unexpected due to the poor start she had with her lungs.

The following day the last of Olivia’s umbilical lines were removed and a ‘long line’ was inserted through her foot to replace these. I couldn’t watch it be performed and we had to take a quick break in the parents’ room whilst the consultant performed the delicate procedure. Afterwards Olivia had another spell under the lights for her jaundice levels, another common occurrence for premature babies.

Days nine and ten saw the first and then second day without any procedures performed on Olivia, it was a break for everyone’s stress levels and we embraced the little bit of calmness that came along with it. On day 11 her weight has increased to 726g and her feeds have increased to 3mL every two hours. Although this was all positive I was still not able to hold Olivia and my emotions were getting the better of me as I felt so hopeless; however these few days would prove to be the calm before the storm!

Olivia’s oxygen requirement started increasing and her desats became more frequent; we were told that she needed a blood transfusion (as she was not able to make her own red blood cells yet) and that that may assist in with her oxygenation. Olivia’s feeds were stopped in preparation of the transfusion, however in conducting some other checks before the transfusion commenced it was discovered that she had an infection. Antibiotics were started immediately and the transfusion is delayed a little, but still went ahead.

A lumbar puncture was performed without any anesthetic (the norm, just a little sugar is given before the procedure) and the long line was removed in suspicion that it may have been a source of infection, which turns out to be the case. Olivia’s tiny 700g body was battling a staph infection. We had been told early in our NICU journey that infection was often a matter of ‘when, not if,’ so whilst somewhat prepared to hear such news, it was still a devastating blow. 

Less than a day after this diagnosis Olivia started having seizures, her oxygen drops dramatically, her colour changes and she makes small repetitive jerking movements. Fear and confusion are added to our devestation and we are once again lost not knowing what to expect.

EEG brain monitoring

On day 15 Olivia was still being treated for infection and still having some seizure activity. She had an EEG performed (a brain scan), and was started on medication whilst a consult was sought from the consultant neurologist at PMH.

My first hold, Day 15

Olivia was still ventilated, but despite all this, I finally was able to hold Olivia for the fist time! It was an emotional turning point for me and I felt empowered and I felt properly like her mother for the first time. I have since given this feedback to Olivia’s neonatologist and commented to anyone who will listen that the first hold is so important for emotional wellbeing.

On day 18 Olivia was finally well enough to have her feeds restarted. The seizure activity was put down to the infection as no other brain abnormality or bleed could be found and they had resolved with the infection. Progress was made in leaps and bounds over the next two days and on day 20 Olivia was finally able to switch from the ventilator to CPAP, and remain on CPAP!

Finally on CPAP and eyes starting to open, Day 21

The following two days Olivia opened her eyes a little for the very first time (they were still fused closed when she was born) and we were also able to hear a tiny little squeak of a cry for the very first time. The last of her IV lines were removed as she was now up to “full feeds” and her oxygen requirement had decreased from 50% down to approximately 35%.

It is only in hindsight that we truly appreciate how sick Olivia was these first three weeks in the NICU and how lucky we are to have such a healthy, thriving two and a half year old today. The team at KEMH are incredible, Olivia is evidence of that fact.

It is the memories of these first few weeks, and my emotional state at the time, which has driven me to want to help other new parents in the same position.

The following 12 (rather less eventful) weeks and Olivia’s eventual homecoming can be read here.

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