I have written this partly to help me come to terms with the loss, and partly to share my story with others who may have lost a heart child. Or who have lost a child shortly after birth.
I also want to acknowledge the incredible team at PICU Starship Hospital. I have never met such wonderful people with true hearts of gold. I could write a whole story just about how each one of you made us feel special and like family. You are all forever intertwined with our precious memories our Jayden.
It has been almost 3 months since I gave birth and almost 2 months since my beautiful baby boy passed away.
I had the perfect pregnancy, no morning sickness at all and I loved being pregnant. My husband and I had decided that we would keep the sex of our baby a surprise and so started decorating a neutral coloured nursery.
At my 20 week scan in Rotorua I was told the baby was lying in a funny position so they couldn’t fully see the heart, I was told not to worry and that it was up to me if I wanted to have another scan or not.
We moved to the North Shore and at 24 weeks I finally got round to having another scan as I just had a feeling something wasn’t right. Again I was told the baby was just in a funny position and they couldn’t quite see all of the heart.
at 28 weeks I had yet another scan and was again told the baby was in an awkward angle, but to be on the safe side should consider having the baby at Auckland hospital so that bubs could be fully checked after birth.
The following week I had my midwife appointment and she decided to speak to the radiographer about the results.
To my surprise I got a call a week later from Auckland hospital arranging an appointment time. I assumed this was to have a look around where I would be delivering. BUT when hubby and I got to the hospital we taken into a room to have a scan, then another scan then another each time a more senior member of staff coming in to do it. We still didn’t think anything much of it until they led us into a private room.
In that private room on level 9 at Auckland hospital my whole world was torn apart. I was 30 weeks pregnant and one of the cardiologists was explaining that our baby had massive heart defects, double outlet right ventricle, a massive VSD (hole in the heart) and his aorta was 2 mm instead of 4mm wide. I sat there stunned not comprehending what we were being told. It wasn’t until my husband asked how bad it was on a scale of 1 - 10 that I realised this was really happening. Our baby was a high 9 1/2 to 10. That was the day the tears started.
After that I had regular checkups and was told that he (as we ended up deciding we wanted no more surprises so asked to know the sex) was doing well inside me and was a big baby. This was good as the bigger the better for heart surgery.
On March 21st I went into labour and on 22nd our beautiful boy Jayden was born. He was whisked away immediately and I barely even saw him. Jayden spent his first night in NICU, and was then moved to PICU the following day. He was a beautiful baby with gold/silvery hair that everyone was just in awe of, he looked like a wee angel. It was decided that he would have surgery in 2 days time.
Kirsten Finucane was to be his surgeon. What an amazing woman she is, I have never met such a dedicated determined woman in all my life. She had decided to do a full repair on Jayden in the one marathon surgery.
The day of the surgery came, and I must say nothing can ever prepare you for the helplessness that a parent feels while their child is in a life or death surgery. After 11 long hours of waiting we were finally able to see our boy. Although they told us his chest would be open and he would have lots of tubes nothing could prepare me for what I saw. I burst into tears, I could actually see his tiny heart beating through the clear tape on his open chest. I have never felt so helpless, I would have given anything to have taken his place. There was not a single limb that didn’t have IV lines in it, and in all he has 22 tubes, lines and drains inserted in his tiny little body.
As time went on Jayden underwent surgery to close his chest, which failed and it had to be re opened. Then another surgery to place a shunt in (a procedure called the Norwood) things were looking better and Jayden was opening his eyes and was aware of his surroundings. But he had oedema which is fluid retention because his kidneys were not working.
We had so many ups and downs during that month in hospital, each day felt like an eternity. I was lucky enough to have stayed at Ronald McDonald House on level 3 so I spent every minute I could with Jayden. Some days he was doing so well, he could hear me talking and would look straight at me with those big blue eyes. We really thought he was going to make it.
But on the morning of 22nd April (exactly 1 month after his birth) I went down to visit him, the minute I saw him I knew that he wasn’t going to make it. His whole body was bruised from the incredible fluid pressure on his skin, and now even his face and ears were swollen, he couldn’t even move his eyes to look at me. John one of the head doctors was telling me that Jayden had finally caught a dreaded infection and because he was still in renal failure he couldn’t fight it off. He was going to die, and it was going to be today.
I called my husband who was at work, and my family from Rotorua and told them to come up and say goodbye so we could turn off the life support. We were moved into a private room with Jayden. Our families said their goodbyes, we made plaster casts of Jayden’s hand and foot, and played his musical seahorse for him one last time.
At 1pm my wee angel died in my arms with his loving father also at his side. He had fought so hard for so long and he was finally at peace. He will be at peace forever more, and I look forward to the day that I can be with him again.
I think about him every day and some days are filled with happy memories of him looking at me and knowing that I was someone special. Other days are filled with anger and sorrow, how could this happen to me, what did I ever do to deserve this and when will this pain ever end. Then there’s the guilt when I realise that I haven’t thought about him for a few hours or that I am feeling happy. I feel guilty to feel this way even though I know I do have to move on with my life, eventually.
You were a special boy, everyone always said there was just something magical about you. I like to think that you were always an angel and were never meant for this world. Now your home and someday I will be there with you. I love you my son, I always always will.
Losing a heart baby.
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TansNiss wrote: