Losing a heart baby.
Printed From: OHbaby!
Category: Support
Forum Name: Stillbirth and Baby Loss
Forum Description: A place to support each other and share thoughts and memories after a stillbirt or the loss of a baby.
URL: https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=34090
Printed Date: 05 May 2024 at 7:32am
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Topic: Losing a heart baby.
Posted By: Jace1
Subject: Losing a heart baby.
Date Posted: 16 June 2010 at 2:17pm
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. |
Replies:
Posted By: Bobchannz
Date Posted: 16 June 2010 at 3:01pm
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Oh Jace what a heartbreaking story. I really hope that you and your husband are getting all the support you need to deal with the loss of your beautiful son Jayden. ------------- www.makedomum.blogspot.co.nz |
Posted By: T_Rex
Date Posted: 16 June 2010 at 3:17pm
 ------------- http://lilypie.com">  http://lilypie.com">
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Posted By: caraMel
Date Posted: 16 June 2010 at 3:54pm
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Jace, sending you lots and lots of love and prayers.
Words seem useless after reading such a heartbreaking story. I'm so, so very sorry for your loss  ------------- Mel, Mummy to E: 6, B: 4 and: 
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Posted By: Chickoin
Date Posted: 16 June 2010 at 4:11pm
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Posted By: noodle
Date Posted: 16 June 2010 at 5:08pm
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how heartbreaking, i'm so so sorry for you're loss! ------------- http://lilypie.com"> 
http://lilypie.com"> 
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Posted By: AandCsmum
Date Posted: 16 June 2010 at 6:09pm
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Know that you are extremely special to be blessed with being his Mum.
------------- Kel http://lilypie.com"> 
A = 01.02.04 & C = 16.01.09 & G = 30.03.12 |
Posted By: NikkiB
Date Posted: 16 June 2010 at 6:30pm
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I'm so so sorry for your loss. I hope you and your family are getting all the support you need during this very difficult time.
I also have a heart baby and have been through many ups and downs with him - even thought I can not imagine what you are going through, I know exactly what you mean about the staff in PICU, they are just amazing. When you are ready, you may want to contact the Heart Children. They may be able to put you in contact with someone who has been through a similar experience. ------------- A very lucky mummy to two gorgeous boys: RB 3/10/2008 JB 29/12/2009 |
Posted By: Raspberryjam
Date Posted: 16 June 2010 at 7:48pm
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I have a heart child too, and I cant even begin to imagine how you coping with this - I wish this had a happy ending for you
He chose you to be his Mummy and Daddy because you love him best xx ------------- http://lilypie.com] 
http://lilypie.com] 
http://lilypie.com] 
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Posted By: ElfsMum
Date Posted: 16 June 2010 at 8:54pm
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------------- Mum to two amazing boys! |
Posted By: Princess_Bubs
Date Posted: 17 June 2010 at 10:44am
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I am so sorry for what you've been through.
May your precious darling Jayden play happily with the Angels xx ------------- http://lilypie.com" rel="nofollow">  Two Precious Angel Babies 2010 / 2011 
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Posted By: james
Date Posted: 17 June 2010 at 12:19pm
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------------- <a href="http://lilypie.com"><img src="http://b4.lilypie.com/nLJ5p13.png" alt="Lilypie 4th Birthday Ticker" border="0" /></a> |
Posted By: jjands
Date Posted: 17 June 2010 at 1:56pm
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Posted By: TansNiss
Date Posted: 17 June 2010 at 4:33pm
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Hi Jace1
Thank you for sharing your beautiful/ heart breaking story with us. It certainly had the tears running and a feeling of de ja vu to me. Although our boy wasn't a heart baby, he was born with severe brain damage and after 16 wonderful days with him, we had to let him go. I can so relate to the feelings you went through/ are going through and just wanted to let you know that I am here for you if you ever need to talk/ vent. Take care Tanya |
Posted By: queenbean
Date Posted: 17 June 2010 at 9:48pm
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I'm so very sorry for the loss of your beautiful boy, big big hugs -------------   
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Posted By: pickle
Date Posted: 17 June 2010 at 10:22pm
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tears rolling down my face, thank you for sharing your story - stay strong and treasure your memories ------------- http://lilypie.com"> 
http://lilypie.com"> 
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Posted By: monkey33
Date Posted: 18 June 2010 at 9:16pm
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I too have tears from reading your story about your beautiful boy Jayden. I am so so sorry for your loss ------------- http://lilypie.com">  http://lilypie.com">
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Posted By: Juzzo
Date Posted: 18 June 2010 at 10:09pm
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Thank you for sharing such a difficult time in your life, I am going to go and give my lovely boys a big hug and know I am so priviledged to have them in my life. I am very sorry for your loss xox ------------- http://lilypie.com"> 
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Posted By: MyLilSquishy
Date Posted: 18 June 2010 at 10:39pm
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Posted By: Jace1
Date Posted: 19 June 2010 at 10:18am
Thank you everyone for your words of support and encouragement, it means alot and it really has helped me to write my whole story down. To Tanya, my love goes out to you and your family. While we were in PICU 3 babies passed away and 2 those were Brain damage, I used to dread seeing the machine come in that monitored them and the tears that followed for their parents, I cryed for those parents some nights, now I know firsthand what that felt like for them. I know you will cheerish those 16 days with your son always. Its a strange feeling being part of the club that no parent ever wants to be part of, but its comforting to share with other who know what you have been through. Thanks Jace |
TansNiss wrote:Posted By: Jessica
Date Posted: 19 June 2010 at 9:49pm
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Jace, you have written so beautifully about your beautiful wee man. Just so heartbreaking, take care ------------- 
Our con-joined boys 20 wk |
Posted By: lil_lease
Date Posted: 19 June 2010 at 10:55pm
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Jace, your story is beautiful. It brought tears to my eyes.
Time makes it easier to live with but you never forget. ------------- Antony, gone but never forgotten 2-4-2010 
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Posted By: bext1
Date Posted: 22 June 2010 at 9:01pm
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My thoughts go out to you Jace. What you went through is heartbreaking and I am crying after reading your story. Thank you for sharing. ------------- 
http://lilypie.com"> 
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Posted By: kriss
Date Posted: 22 June 2010 at 11:13pm
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Oh Jace, all my love and thoughts go out to you, your DH & angel Jayden.. I am also in tears, your story is lovely and heartbreaking at the same time ------------- http://lilypie.com"> 
http://lilypie.com"> 
Little Angel, April 10
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Posted By: Nutella
Date Posted: 23 June 2010 at 1:24am
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Aww honey, thank you for sharing your story, I'm so sorry you had to go through that. He sounds like a beautiful wee thing.
My little sister was born with a hole in her heart and died during the operation. I was too little to know what was going on but I always think of her and she is special to me still. ------------- 
Oct 11
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Posted By: Shezamumof3
Date Posted: 24 June 2010 at 3:56pm
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aww my gosh, words fail me other than, I am so so sorry for your loss ------------- |
Posted By: Emmi_
Date Posted: 27 June 2010 at 8:07pm
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hugs from me too. thank you so much for sharing your story, it bought tears to my eyes and made me hug my daughter that much longer. you are incredibly strong
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+1 May 09 Angel
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Posted By: shadowfeet
Date Posted: 28 June 2010 at 10:47pm
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Thanks for sharing your memories of your wee boy ------------- 
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Posted By: peaceandlove
Date Posted: 16 July 2010 at 2:01pm
| HUG!!!!! |
Posted By: DaisyAngel
Date Posted: 18 July 2010 at 10:28am
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I'm so sorry for you and your family I'm sitting here crying for you, what a sad story ------------- 
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Posted By: julz85
Date Posted: 19 July 2010 at 10:38pm
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thank you for sharing your story , your wee boy is with the angels now, i do hope you and your husband are getting all the love and support you need . My cousin had a wee boy named Jayden too , a gorgeous wee boy and he lived for just 10days , born 7 weeks early , he was absolutly fine until he caught an infection .Now 5 1/2 years on and my cousin still has bad days, days where you can tell just by looking at her that he is on her mind , but she also has a very happy fufilled life with a beautiful wee duaghter . Time does heal to the point that makes life worth living again , you will have awful days but you will also have great, amazing life changing moments in your future , look forward to those moments at the same time holding on to the memory of you amazing wee man . big hugs ------------- http://lilypie.com">  
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Posted By: WestiesGirl
Date Posted: 19 July 2010 at 11:25pm
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What an amazing story, thanks for sharing. I have no words Im so sorry for your loss ------------- Our Angel July 08 Gone but not forgotten
And to complete our family, our princess has arrived 
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Posted By: Jace1
Date Posted: 20 July 2010 at 10:05am
Thank you so much, and sorry to hear about your cousins baby. I am much the same as that at the moment and have days when my husband can tell thats all I am thinking about. We are trying for another baby now but with PCOS it took 2 years to get pregnant last time, hopefully it happens sooner this time. |