Chayce James Phillipps-Lewis ~ 24/12/2020
First born child to Mark & Tayla Phillipps-Lewis.
Gone way to soon. Fly high baby boy x
We live in Melbourne and we found out we were pregnant during COVID lockdown.
My period was barely late, but both of my dogs were acting really weird around me so when my husband, Mark, was in town I asked him to get me a pregnancy test.
He came home with a variety of different tests, bless his soul.
The day our lives changed forever was Monday 20th July 2020, when we got our very first faint positive, it was so faint that I didn't even initially say anything.
I put the test down, and went back into my office, as I was working from home at the time.
I couldn't stop thinking about it, so 10 minutes later I went back into the bathroom to double check it. I reluctantly showed Mark and asked him if he could see two lines. He literally snatched the stick from my hands and excitedly yells 'YES! Go pee on a digital stick right now!".
As I was waiting forever for it to load, Mark was staring at me, staring at the stick. It eventually came up with those magic words "Pregnant - 1- 2 weeks".
After the initial shock wore off, I swear we could have died from happiness. We were dancing in our lounge room, knowing our lives were about to get flipped upside down and we welcomed it with open arms. Little did we know the journey we had ahead of us at this point.
We told close friends and family, just because we were so excited and couldn't keep the good news to ourselves! We decided to announce it on Facebook at 12 weeks, thinking it was the 'safe zone' and we did an online gender reveal party (thank you COVID) to find out we were expecting a baby boy. We were overwhelmed with joy.
We did every single test recommended to us and all the results came back with 'low risk', including the Noninvasive Prenatal test (NIPT) that screens for common chromosomal conditions.
I pretty much had a 'textbook' pregnancy and I enjoyed the entire journey, but admit I was overwhelmed and stressed with work commitments at the time and was often emotional being stuck in the house because of lockdown. The only complaints I had throughout my pregnancy, were severe tiredness and a sore lower back, pretty much from the start to the end.
I was accepted to give birth at a rural hospital, where they only accept 'low risk' patients and I was excited to have my son there.
All my appointments with the Obstetrician's were done over the phone (yep.. COVID), and each time I spoke to a different person who would ask me the same questions as the last phone call, I would give the same answers and then the conversation would be over.
For 23 weeks, I was never seen to by any other medical professional, other than my GP and a different ultrasound Sonographer at each routine scan.
My belly was not once measured.
I tried to sign up for baby birthing classes, but kept getting the run around.
Every time I rang the hospital I felt like I was bothering them and they were too busy for me.
I felt so ripped off throughout this experience, but it was my first pregnancy so I didn't really know what to expect either.
I will never know for certain, if something could have been found earlier if I was seen to - Maybe, maybe not but my gut says it could have.
Regardless, I understand it wouldn't have changed the outcome, but perhaps we wouldn't have been so far along.
It took me a while but eventually I started buying things for bub. I was really worried I would ‘jinx’ it if I bought things too early on. I don’t even know where that fear came from considering at this point I was none the wiser that things could go so terribly wrong.
My sister-in-law handed down so many baby items, some were still brand new.
I was so grateful that our baby would be lucky enough to use things that were his older cousins. My parents also went crazy with all the baby purchases. They were excited for their first grandchild. Chayce was already so spoilt and loved and his nursery was well on the way to completion.
Thursday 12th November 2020 - 20 weeks
Our 20 week scan was the first scan Mark was allowed to attend, so we were both really excited. Everything went well, the only problem was that Chayce was in the wrong position for one particular photo that the Sonographer wanted. I tried to walk around and get him to move but he just wouldn't get into the right position. The Sonographer didn't seem too concerned and told us to come back in 3-4 weeks time and we will try again. So, without thinking too much into it, we made another appointment. I was actually stoked to be able to see Chayce again.
Friday 4th December 2020 - 23 weeks
I was supposed to go for this scan on the 3rd December, but it was my younger sisters birthday and I didn't want to be late to her dinner, so I rescheduled for the next day.
Because it was only one photo that was needed, I told Mark not to finish work early to come and instead asked my mum if she would like to come with me, which she did (thankfully).
The Sonographer had a look around and it wasn't until she said "I'll be right back, I just need to speak to my manager" that my anxiety kicked in. I looked at mum and said "Mum, somethings wrong".
Mum reassured me that she didn't get that impression and that I was being my "usual negative self".
The Sonographer eventually returned and her words will haunt me for the rest of my life.. "Okay, so were not happy with his abdomen area, it seems quiet enlarged. We are going to refer you to the hospital where they will be able to do tertiary scans, but unfortunately nobody will be available over the weekend"....
I started balling my eyes out. I couldn't breathe. Things go a little blurry from here on in but I remember my mum held my hand and stepped in for me because I couldn’t get my words out. She asked the lady more questions to try and understand what she had seen. To which she replied "Sorry I'm not at liberty to say".
Great.... I thought. But I did understand.
I left the imaging place and sat in the car, in absolute disbelief. I remember actually feeling like my heart had left my chest. Next thing I knew Mark was there trying to comfort me.
Heartbroken didn’t feel like a strong enough word, but that’s all I had to describe it.
It was an anxious night. One of the midwives from the rural hospital where I was supposed to deliver, finally rang and we literally experienced the coldest phone call of our lives.
She basically re-confirmed what the Sonographer had already told us earlier, but then decided to add the devastating comment of "You may need to consider terminating your pregnancy".
Mark grabbed the phone off me and says "If you don't have all the facts yet, why would you say such a thing?!?"
We have never come across someone so heartless, cold or unempathetic and she is absolutely in the wrong industry.
I wish she knew that we spent the rest of the night crying on our lounge room floor, ringing every hospital in Melbourne trying to find someone to see us. No joy.
We spent Saturday morning in the emergency department, our theory was if we were in front of them, then they surely had to attend to me, right? Well they checked my vitals, checked bubs heart beat then sent us on our way, again telling us to wait until Monday and that nobody can see us over the weekend. We couldn't believe it. It felt like our world was crashing down around us and nobody even cared.
So on the Monday morning, we turned up to a different emergency department begging to be seen. We were informed that the earliest they could get us an appointment would be the coming Wednesday. They also told us they were doing us a 'favour' getting us in so soon and that normally we would have to wait a couple of weeks to get an appointment.
I cant even fathom how one of the best countries in the world is so backwards when it comes to the care of a pregnant women and her unborn baby.
Another two painful nights. No eating, no sleeping, just lots and lots of crying and worrying. We were so lost, so scared and the wait was unbearable.
Wednesday 9th December 2020
We stepped foot into the fetal medicine unit, both so nervous and I was sure I was about to pass out. The suspense was killing me.
We were asked to wait in the waiting room, watching other pregnant ladies walk by... I just wanted to crawl in a hole.
Eventually our worst fears (and more) were identified and confirmed. It breaks my heart to write this, but our son had a lengthy list of life limiting abnormalities, including a significantly enlarged liver and spleen, which was pressing on his other little organs and squishing them to the point of severe deviation, he wasn't swallowing properly, the poor darling had two holes in his heart and unfortunately the list goes on. Our medical team, made it very clear that Chayce would be unlikely to survive to full term and if by slight chance he did make it and then survive the birth, his life would not be one of quality - We're talking palliative care, intensive operations, in and out of hospital for the rest of his life, a large medical team trying to keep him alive. A painful life of suffering - with absolutely zero guarantees.
We were given two heartbreaking 'options', that lets be clear, never really felt like options.
1. Continue with the pregnancy and let nature take its course. Risk the chance of Chayce surviving, then watching him endure the painful long road ahead of him, with the knowledge that if he did make it, he will never have the opportunity to live a solid quality 'normal' life as a happy, healthy little boy..
2. Terminate our wanted pregnancy for medical reasons (TFMR). End the suffering before it was too late for him.
We eventually reluctantly somehow agreed to go ahead with the biggest sacrifice we will ever have to make. One that I wouldn't wish on anybody. Option 2.
My experience of a termination at 26 weeks here in Australia, went like this:
1. Firstly we would have to go through the exact same appointment again with a different doctor to obtain a second opinion through the hospital. At this point, I was still clinging to hope that this Doctor would tell us how very wrong the previous Doctor was and that they could absolutely help our boy. This obviously didn’t happen.
2. Our case would then need to be put to a medical board, who would need to agree with our decision. We were told this could take up to 2 weeks to be approved, however it was approved within the same day, which just confirms how serious the situation was. I welcomed this process, even though it was supposed to be a lengthy one. It was somewhat comforting to know how thoroughly his case was being reviewed and taken seriously. Our little boy was being considered in every way possible.
3. Once approved, we would then be scheduled in for the worst, most traumatic appointment of our lives, where our sons heart would be stopped.
4. We would be sent home for 2 days to let the process of labour begin... (I could not fathom this at the time)
5. Then we were to go in to hospital and be induced for labour and give birth to our boy. With absolutely no birthing education or preparation whatsoever.
Because this was approaching Christmas time, we were initially told we would most likely have to wait until the new year to give birth, as there wouldn't be many doctors available during this time.
The thought of having my son for several more weeks, knowing he would only be growing more and more, only broke my heart into smaller pieces, bit by bit. Every time he kicked I wanted to smile and cry at the same time.
But after the shock wore off, I prepared myself to have a few more weeks with him. I was determined to enjoy every second we had left as a family, given the circumstances.
We cancelled our yearly trip to see Mark's family in Queensland over the Christmas period.
We got maternity photos taken, along with our first and only Family Santa photos.
We sang and talked to him and really cherished these precious moments.
Then we suddenly got the unexpected news that the hospital wanted to push our appointment forward to the following week, it had now become a priority for them.
It took us a little while to re-adjust with this news, but we eventually agreed. We figured there was no point unnecessarily delaying the impending doom any further.
Birth Story
Monday 21st December
I don't really feel the need to go into too much graphic detail about this, because it was the worst moment of our lives.
Our sons heart was stopped with an injection into my belly and I think you can paint the picture for yourself as you are reading this on how it went.
I somehow had to get myself together to sign a piece of paper agreeing to this procedure whilst uncontrollably shaking, crying and pleading with the doctor that there must be another way.
I hate that my signature is on a document filed away who knows where, agreeing to what had to be done. It's cruel. It's awful. It's the hardest thing I have ever done or ever will have to do.
They didn't even need nor want Mark's signature, which was just another slap in the face, especially for him. As the father to our child, as my husband, his signature was not needed on such an important piece of medical paperwork regarding our son. I felt entirely responsible, which just contributed to the mental load of the trauma.
Before the procedure took place I remember laying there holding Mark's hand and saying to the 2 doctors and 2 midwives in the room “Please tell me we are doing the right thing?!”
They all looked at me with the same heartbroken look “Oh hun, you are making the biggest sacrifice out of love for your baby. He will never know pain”.
I remember taking a deep breath and asking for Chayce to forgive me and that I love him.
While holding my hand, Mark said “Tay, these medical professionals help save lives every single day, they don’t take them away unless there is absolutely no other choice”.
I kept repeating these things in my head because they were right.
Mark watched the process unfold right in front of his eyes, but I couldn't.
Even though I refused to watch, I stared into Mark's eyes the entire time, watching him watch our son pass away. I'll never get that image out of my head and neither of us have ever been the same since that day.
I was then given medication to trick my brain into thinking it was ready for labour and we were sent home for the next 2 days to let the process begin. I barely moved from my bed.
Mark would feed me, help me to the toilet and shower me. But I was barely functioning otherwise. These were the saddest, loneliest days of my life.
Wednesday 23rd December
Leaving the house that morning was beyond emotional, knowing I’d have to return home, no longer pregnant and with empty arms. Our house has never felt like home since then to be honest.
We went into hospital knowing what we were there for, but no one could ever prepare you for what lay ahead. They settled us into our own little private room, which was lovely.
Because of COVID, I wasn't allowed to have anyone else with me other than Mark.
They got straight into it, giving me more medication to induce me. They had to give me this particular medication every few hours.
I was having extreme back pain but other than that, nothing else was happening.
Turns out I was having a back labour. I wasn't feeling any contractions in my stomach, instead all from my back. And the pain was intense and extremely uncomfortable.
We tried everything to manage the pain. We did sterile water injections (which I would not recommend), bounced on the medicine ball, hot showers, massages, pressure, every kind of drug including gas. Nothing was working for long enough.
Eventually I begged for the epidural, which instantly helped and enabled me to focus on giving birth.
We had a lovely team of midwives looking after us. There were two in particular I will never forget.
One poor lady was delivering her first stillborn, so she was emotional alongside us, which was actually quiet special in a weird kind of way.
The other was an angel sent from above, who even brought me in a slice of her grandmas famous lasagna because she found out it's my favourite.
They made this awful experience just that little bit less awful, by being beautiful people.
Thursday 24th December - Christmas Eve.
After 26ish hours of labour, this was the day that Chayce would make his entrance into this world, even though it was for a short time.
Born at 26 weeks gestation on the 24/12/2020 at 1:49pm, 1.09kgs, 33cm long and oh so beautiful - But silent and still.
He was placed on my chest and I have never felt so many emotions at once in my entire life.
I was instantly calm, yet hopeful I'd hear him cry - Which he obviously never would.
I looked at him and wondered how such a sick little boy could look so beautiful.
I honestly thought for a second that the doctors had got it wrong. But when I saw his swollen stomach, I knew. I knew something was very wrong.
Mark was understandably a mess, but he did such a good job being my support person.
He held my hand the entire time, he helped me with every push, he was right there and didn't shy away from it at all, no matter how uncomfortable and helpless he felt.
He even cut the umbilical cord, which was a proud moment for us both.
I knew straight away that we would try again. I would have done that 100 times to hold him in my arms again. It was so precious. My proudest moment, my biggest achievement.
We spent 24 hours with Chayce. We got to bathe him and dress him, with the help from the beautiful midwives.
We got prints of his little hands and feet. We had professional photos taken with him through Heartfelt. Photos I will cherish for the rest of my life.
My mum was able to meet her first grandchild, for the first and only time.
I stared at him for hours in his little cot, which was placed next to my bed.
All the emotions hit me that night. I didn't want to fall asleep because I knew that was the only night I would get to spend with him.
I wanted to stare at him forever but I eventually cried myself to sleep.
Friday 25th December - Christmas Day.
When I woke up, I was so disappointed in myself for falling asleep and I knew it was the day I had to hand him back - I just couldn't cope with it.
But he was so ready. He had been ready for hours. It was me that wasn't - I would never be ready.
But 2pm came, the midwife came in. It was time.
I gave Chayce one last kiss and told him I loved him and that I will miss him.
Mark did the same, then he handed the cot over to our midwife, who then wheeled him out of our room. Something I just couldn’t do.
With tears running down our face we had to watch him leave, knowing he will never come back.
We then had to leave the hospital, walk to the car and drive away.
With a piece of me missing and an intense sense of overwhelming guilt.
How could I just leave him in there and drive off to go back and live my life?
I'm his mum. I was supposed to protect him.
I will never be the same person as I was before I went into hospital.
Diagnosis
Up until a few weeks ago, we still didn't have any answers on what caused Chayce's poor health and to be honest I started accepting the fact that we might not ever know.
Everybody was warning us that sometimes, there are just no answers for these tragic events.
The painfully lengthy process of finding answers went like this:
1. It was confirmed shortly after Chayce passed, that his chromosomes were considered 'normal.'
2. Doctors confirmed that my blood test results were fine. No concerns there.
3. Chayce's autopsy results eventually came back in late March, which basically only confirmed what we already knew. We still didn't have the answers as to what actually caused all of his major abnormalities but they wanted to do further testing on us (as his parents) to determine whether either of us are carriers of any gene mutations that might have been passed on to Chayce.
4. We therefore underwent reproductive carrier screening testing through Eugene (I will write about this in more detail at a later date) and after a few weeks of waiting, we were reassured that is was extremely unlikely that either of us would/could pass on a serious genetic condition to our children including Chayce, as neither of us carry any of the same gene variants.
5. We also opted for genomic testing to be performed on Chayce's DNA, which eventually resulted in the call we had been waiting for in early May.
Our Geneticist through the hospital confirmed that the laboratory performed clinical exome sequencing, and the test identified a gene mutation in Chayce called HRAS. Mutations in this gene are associated with a ultra-rare genetic syndrome called Costello Syndrome.
Generally, when parents are unaffected, HRAS gene mutations leading to Costello Syndrome happen as new changes in affected children rather than inherited from one of the parents. He also advised the chance of recurrence of Costello syndrome is less than 1% in our future children.
I soon learned that Costello Syndrome is a disorder that involves delayed physical and mental development. It affects various parts of the body and is characterized by loose folds of skin, poor muscle tone, affects multiple organ systems, and other serious life-limiting problems. It also increases the risk of developing certain cancers. There is no treatment for Costello Syndrome, but the symptoms CAN be managed depending on their severity. We also learned that Chayce presented a severe case of this cruel disorder.
I'm sure my heart stopped during this phone call. This was the missing piece to the puzzle....
The most heartbreaking, unlucky, devastating truth finally received about Chayce - Yet such positive, heartwarming, relieving news for our future children.
Such a bitter sweet conversation to have.
There was absolutely nothing anyone could have done to avoid this.
As his parents, we still feel that we made the best decision for his wellbeing. We just wish things were different.
There will always be a missing person at our dinner table, in our family photos and one less body to tuck into bed at night, as our family grows in the future.
I wish somebody would have warned me of this possibility in pregnancy, because the shock clouded my mind and made everything so much harder to understand.
Chayce is in the heart of everything we do now.
Our mission is now to raise as much awareness for pregnancy and infant loss and funds as possible.
I just want everyone to know how loved and terribly missed Chayce is. I want everyone to know that we feel so lucky that we get to be his parents, even though life was so unlucky to him.
Chayce was here.
Chayce was rare.
Chayce will make some kind of a difference.
To learn more you can head to the following link CostelloKids
Tayla Phillipps-Lewis
Australia
Submitted 30/05/2021