AMA
My son died aged 6 months from a heart condition. AMA.
Pancakepipsqueak · 20/02/2023 19:05
ive wanted to do this as I know baby/child death isn’t always talked about.
My son died in 2019 after living in hospital for 6 months. He had a heart condition.
Ask me anything
BreakingBread · 24/02/2023 18:00
@Pancakepipsqueak
Thank you for this thread. I'm so sorry for your loss.
Our son and DIL are expecting a baby this summer and were told at the 20 week scan that the baby has HLHS.
Do you have any suggestions about the best way to support them, both now and after the baby is born? We have joined the Little Hearts Matter charity, and we're trying to be as positive and hopeful as we can without denying the challenges that lie ahead.
Pancakepipsqueak · 24/02/2023 18:18
@BreakingBread I’m sorry about your grandchild’s diagnosis and I have every hope that everything runs smoothly for them and your family. The outcome I had isn’t the only outcome - some hypoplast babies are a lot steadier than teddy was.
i think knowing as much as you can rather than asking them questions helps. It was hard and arduous being the information giver when everyone has access to google and research. Little Hearts matter is a great charity and resource. They also offer support for grandparents and support Facebook groups I believe.
now, I think anything that can help give them breaks if they need it. Bringing food for freezer, walking dogs, offering babysitting if have other children. Anything to help. But also backing off as they need time alone to process as well.
after, accept they may be in hospital for a long time - as long as 6 months between the first surgery (Norwood) and second surgery (Glenn). hypoplast babies look perfect and healthy - that’s part of what makes it so hard. But they are very poorly babies and very unstable. They might be fine one day and very sick the next.
sending lots of love and hope. Hypoplast babies are incredible - doctors don’t know how they adapt to such low O2 saturations (75-85% after Norwood) but they do and they can thrive. They’re miracles.
BreakingBread · 24/02/2023 18:25
Pancakepipsqueak · 24/02/2023 18:18
@BreakingBread I’m sorry about your grandchild’s diagnosis and I have every hope that everything runs smoothly for them and your family. The outcome I had isn’t the only outcome - some hypoplast babies are a lot steadier than teddy was.
i think knowing as much as you can rather than asking them questions helps. It was hard and arduous being the information giver when everyone has access to google and research. Little Hearts matter is a great charity and resource. They also offer support for grandparents and support Facebook groups I believe.
now, I think anything that can help give them breaks if they need it. Bringing food for freezer, walking dogs, offering babysitting if have other children. Anything to help. But also backing off as they need time alone to process as well.
after, accept they may be in hospital for a long time - as long as 6 months between the first surgery (Norwood) and second surgery (Glenn). hypoplast babies look perfect and healthy - that’s part of what makes it so hard. But they are very poorly babies and very unstable. They might be fine one day and very sick the next.
sending lots of love and hope. Hypoplast babies are incredible - doctors don’t know how they adapt to such low O2 saturations (75-85% after Norwood) but they do and they can thrive. They’re miracles.
Thank you for this.
I'm wondering whether to show them this thread.........do you think you would have found it helpful before your baby was born? Or would it have made you more fearful?
They're being realistic about the risks and know outcomes are very variable, but obviously we don't want to feed their fear and anxiety.
Pancakepipsqueak · 24/02/2023 18:30
@BreakingBread I spoke with parents who had babies who died before teddy was born; I also spoke with parents who had alive children. Speaking for myself, I wanted to be fully informed of any possibility. I also was well aware of the fact there was a good chance that Teddy would die, and I wanted to know I would survive that pain. speaking and looking to parents who had survived it, helped calm that anxiety. I’m happy to answer any questions they might have if they want.
Pancakepipsqueak · 24/02/2023 18:55
@catfunk family and friends visiting when we were in hospital was nice and a break. They’d bring us food or take us out for a meal or a walk which was nice.
the thing that grated me was people not listening and saying stock toxic positive phrases like “doctors can do amazing things these days”. It made me seethe because I know they can - but some things are still terminal. And it would put me in a very awkward position if I wanted to truly get across how serious it was.
another part that sticks out as not helpful when teddy was alive was the hospital counsellor asking “well what are you scared of” in a concerned way, making me say in front of teddy “that he’s going to die”. It was bloody obvious what I was scared of!!
Also, those who made the effort to come to teddys funeral have a special place in my heart. I chose to have an open funeral to all friends and family and the amount of people there was overwhelming but lovely. I remember one of my friends actually came home from an abroad holiday early to attend. I will never forget that.
on the flip side, I had family members who “couldn’t get the time off work” and I haven’t spoken to them since.
Pancakepipsqueak · 24/02/2023 19:15
@WoeBeCome i think absence of the scan does not mean absence of the anomaly. Like you said, the scan gives medical professionals the opportunity to save babies lives with in utero treatment or immediate treatment at birth that they can be well prepared for. I think not giving your baby that opportunity if they need it because you don’t like the vibes of a factual name is borderline negligent.
“cancer screening””STD checks”. Does their logic extend to their own health? Or just their babies?
movesyouveneverseen · 04/03/2023 19:18
I’ve just read this thread and as soon as I saw the name Teddy I wondered if it was your thread I’d read a few years ago and then your blog and it seems it was.
I am so happy to hear that Teddy now has a sister and you get to share your precious memories of Teddy with her.
purplepandas · 04/03/2023 19:25
I just saw this @Pancakepipsqueak but wanted to say what a lovely way to remember and ce;lebrate Teddy. I lost DD1 shortly after birth (DD2 is DD1's twin). DD3 has DD1's name as a middle name too. We all talk about DD1, it't their normal (mine are older now). Lovely hearing about your beautiful boy.
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