My son died aged 6 months from a heart condition. AMA.

[Pancakepipsqueak]

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

[purplepandas]

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.

[Pancakepipsqueak]

@movesyouveneverseen it was, yes! I’m glad Teddy is remembered on this little corner of the internet xx

[movesyouveneverseen]

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.

[SusiePevensie]

@Pancakepipsqueak, six months of cuddles and funny faces is a good six months.

[WoeBeCome]

Yes, I agree. Thanks for taking the time to answer, I know it’s a bit of a weird question but it something that really plays on my mind and I couldn’t quite tell if I was overreacting to it or not.

Also thank you for taking the time to do this AMA.

[Pancakepipsqueak]

@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?

[WoeBeCome]

Yes, that’s exactly what I mean. I can no longer have any kind of meaningful conversation with this person, luckily not someone I really come into contact with. My babies’ lives were save by the anomaly scan. I think it’s so negligent.

[Pancakepipsqueak]

@WoeBeCome I’m not sure I understand your question - as in people turn down the 20 week anomaly scan because they find the phrase anomaly scan negative?

[WoeBeCome]

What would you think of someone who turned down the 20 week anomaly scan because its name is negative?

[Pancakepipsqueak]

@Letsgoforaskip thank you ❤️

[Letsgoforaskip]

Your warmth and love absolutely shine through. I’m so sorry Teddy’s heart couldn’t give him a long life but he was clearly adored and cherished. Your daughter is a lucky little girl ❤️💐

[Pancakepipsqueak]

@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.

[catfunk]

Hi pancakepipsqueak.
I wonder if there are any things that people said/ did when you were in the thick of it that were particularly helpful or welcome, and on the other hand anything they did that made it worse for you ?

[Pancakepipsqueak]

@SusiePevensie I remember him cracking a smile and his dad making funny faces and noises. I think his favourite thing was being cuddled and read to sleep. And his dummy. He could never be far from his dummy.

[SusiePevensie]

What do you think his favorite thing was?

[BreakingBread]

Thank you so much Pancake, that's really kind. I will give it some thought and chat about it with my OH.

[Pancakepipsqueak]

@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.

[BreakingBread]

@Pancakepipsqueak

@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]

@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]

@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]

@Wearpantsffs I'm so sorry to hear about your little one's diagnosis. I think I've learnt there is no right decision - they're all wrong and heartbreaking but what you can make peace with depends on you and your circumstances at the time.

@toastofthetown My advice to anyone going through it would be to cope however you need to - pull on any coping mechanism you need for the short term. Deal with it afterwards with counselling and therapy. Lean on the nurses. Make sure you take breaks from hospital. You don't win prizes for spending 24 hours at bedside, and it doesn't do you good. For after, my advice would be to prioritise yourself and your mental health. don't do things out of obligation. Hibernate if you need to. Get away if you need to. Stay home if you need to.

@weebarra I'm sorry that happened. There is a charity - tinytickers - that advocates for further training for sonographers on fatal scans to recognise heart defects. They also educate on signs for new parents to watch out for for a CHD, and advocate for the use of oximetry on babies as this can detect some CHDs.

@Ihatethenewlook My favourite memories were the 3 days we got to spend at home. He was really well, comfortable, and we just relaxed. I got to spend time alone with him - he was 4 months old at the time and I'd never been in a room alone with him. At the hospital - tummy time when the nurses literally cheered him on when he lifted his head, Christmas Day when he was intubated on PICU and the consultant handed us a glass of champagne and we watched Mary Poppins with him, and reading Harry Potter with him and his dad.

@pbdr Thank you - I'm glad I've been informative for you. I'd love to blog and speak on it more to spread the message, but a full time job (in adults cardiology as a manager) and a 2 year old as a single parent means my free time is severely limited.

@Ginger1982 Our break up was multifactorial. We are still friends, and he is also Piper's dad. I think the main thing that affected us was having a newborn in COVID lockdowns, ironically. But our grief after Teddy definitely made things very difficult. We still have a lot of love for each other, and we coparent very effectively and lovingly together. But we both have new partners.

Thank you for everyone's thoughts and love for Teddy; I appreciate it.

[Ginger1982]

You said Teddy's father was your ex. Did his death cause you to split up?

[pbdr]

I remember you and your lovely little Teddy so well. Years ago I followed your blog for a long time, desperately hoping for the best possible outcome. I cried when you had to say goodbye to your little boy. I have thought about him on many occasions over the years since, and as a GP reading about your family's experience gave me a level of insight that has allowed me to understand and support other families of babies with HLHS better.

Little Teddy didn't get as long in this world as he deserved, but he mattered so incredibly much and I have no doubt touched plenty of other people's lives like he touched mine. I'll never forget him.

[Ihatethenewlook]

What’s your favourite memory of him?

[Sunnysunbun]

Theodore is such a beautiful name. I’m so sorry for your loss. X