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
Pancakepipsqueak · 20/02/2023 20:06
@Willdenytothedeath hi! Yes you may have. - I had a thread on here when I was pregnant and didn’t want to go for monitoring when he was quiet (anxiety, fed up, tired, traumatised etc) as I had high pressure in the placenta which meant he was small and not very active. The support I had on that thread showed me how important internet can be for people, especially those going through something exceptional and isolating. Thank you for remembering and thinking of my Teddy x
raabbgghhrbb123 · 20/02/2023 20:38
Hey, I have a question, having lost my boy at 4 months after being born at 25 weeks. If you don't mind me asking, Do you say you are a mum if two if people ask. I luckily had a daughter after losing my son and say I'm a mum of two even though it's just my girl with me now, if I'm asked and get odd looks sometimes as i don't want to explain i.e. repeat private loss time and time again. I just wondered if others who have lost children did the same. Hope that makes sense. 😀
Pancakepipsqueak · 20/02/2023 20:46
@raabbgghhrbb123 im sorry for your loss.
i don’t tell people if I don’t want to go into detail or I’ll sort of side step the question. It was hard when I was pregnant with my daughter as I’d get a lot of “is this your first”. I’d always tell medical professionals as I didn’t want to be treated like a “first time mum”. For random people who asked, I’d assess how I felt at the time. I decided some people didn’t deserve to know and I didn’t have to put myself in such a vulnerable position if I didn’t want to for a stranger so sometimes I would say it was my first. It did leave a bad taste in my mouth sometimes, but I preferred that to crying with strangers ha
Pancakepipsqueak · 20/02/2023 20:51
@raabbgghhrbb123 it is and there’s no right answer. The same person could ask me 2 days running and I could given them different answers.
now I try and assess how much people are likely to be in my life moving forward as to whether I tell them. People I think I will end up seeing/being close to I tell so I don’t have to lie to keep up a facade. People I’m never going to see again don’t usually get a look in. People at work it depends, but I do have a picture of him on my desk so sometimes people do ask which I don’t mind but it’s rare I bring him up in conversation.
Kernackered · 20/02/2023 20:51
Pancakepipsqueak · 20/02/2023 19:59
@Kernackered hope your heart warrior is safe and well.
He is thanks. Had surgery day 3, then at 1. Will need more in a few years but is well for now. I always felt like we were one of the lucky ones considering the success rate of his op. Its a terribly tough time living in hospital. Much love to you
Ginge912 · 20/02/2023 21:37
Just seen this and had to comment.
I’m so sorry for the loss of your precious baby. My son also passed away due to a heart condition when he was 5 days old. He too was at Leeds and had Fantastic DRs and Nurses. Dr English and Dr Brown we’re 2 that stuck in my mind.
We too have had another child and his middle name is that of our son who died.
Sending so much love to you and your family. X
Wearpantsffs · 23/02/2023 21:39
I’m very grateful for you writing this AMA. We terminated at 23 weeks as our DD had a HRHS and a cross cross heart. It was a terrible decision to make and to live with afterwards. So to hear you say you’re not sure you’d continue another pregnancy with a similar diagnosis means a lot x
pbdr · 23/02/2023 22:27
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.
Pancakepipsqueak · 24/02/2023 17:29
@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.
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