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AMA
Original poster

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

70 replies

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

OP posts:
whoruntheworldgirls · 20/02/2023 19:07

No questions but i'm so sorry for your loss. What was his name?

Original poster
Pancakepipsqueak · 20/02/2023 19:08

His name is Teddy (Theodore). His name is now my daughter (2 and a half years old) middle name as I love the name so much.

OP posts:
drpet49 · 20/02/2023 19:09

Sorry for your loss OP. Was his condition known before you gave birth or after?

SnuggleBuggleBoo · 20/02/2023 19:10

I'm so sorry your baby died. How horrific.

My question is, do you talk to your daughter about him, look at pictures with her etc? Do you think she has any real understanding or is she too young to 'get' it?

Original poster
Pancakepipsqueak · 20/02/2023 19:12

@drpet49 we found out that something was wrong at the 20 week scan and were referred to a specialist hospital about an hour away. We were offered termination, comfort care (no intervention when born) or a 3 stage surgery that wouldn’t have cured him but would have extended life expectancy until mid teens (60% survival rate).

OP posts:
Original poster
Pancakepipsqueak · 20/02/2023 19:14

@SnuggleBuggleBoo she looks at picture of him on my phone and we have printed photos around the house. Currently she thinks that the pictures are of her as they look so similar but she says his name. She has one of his stuffed toys and calls is her Teddy Moose (it’s a moose comforter) as it has his name on it.

OP posts:
Slimjimtobe · 20/02/2023 19:15

Sorry for the loss of your lovely boy ❤️

Original poster
Pancakepipsqueak · 20/02/2023 19:15

@SnuggleBuggleBoo I think she’s too young to understand but I’ll definitely explain in an age appropriate way as she gets older once I’ve figured out a way to tell her!

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Original poster
Pancakepipsqueak · 20/02/2023 19:15

@Slimjimtobe thank you. He is lovely and very missed.

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Pinkfrogs45 · 20/02/2023 19:16

As someone who has chosen a TFMR do you ever think back to that decision point? Do you feel you made the right choice?

I was in the first trimester which makes the decision easier, I can’t even imagine post 20 weeks that choice.

Not for OP but if anyone finds this thread in the future ARC are amazing and you can call them just to cry and talk. www.arc-uk.org

Original poster
Pancakepipsqueak · 20/02/2023 19:19

@Pinkfrogs45 I think we did the right thing at the time and I’ll never regret the time I got to spend with teddy as despite being traumatic, they are loved moments and I think back on that time fondly (sometimes wish I could just live in those 6 months forever). However, we did have to consider it may happen again in subsequent pregnancies and decided that if the worst should happen again I would undergo a TFMR. We had an early heart scan with my daughter at 16 weeks which I had to push for during covid because I knew that if she had the same condition I would be having a TFMR and knew the earlier the better.
I have also undergone TFMR since which I don’t regret (earlier in pregnancy under 10 weeks)

OP posts:
whoruntheworldgirls · 20/02/2023 19:20

Pancakepipsqueak · 20/02/2023 19:08

His name is Teddy (Theodore). His name is now my daughter (2 and a half years old) middle name as I love the name so much.

That's beautiful 😍

Bekindbekind · 20/02/2023 19:21

Oh bless him. Did he have hypoplastic left heart syndrome? (I wouldn’t normally ask that, but it’s an AMA after all. Obviously you don’t have to answer.)

I’m sorry for your loss, and sorry that Teddy didn’t get to grow up to experience all the amazing things this world has to offer. There’s a lot of sh*t but there’s beautiful stuff too 💐

Original poster
Pancakepipsqueak · 20/02/2023 19:24

@Bekindbekind he did! HLHS however he did have a left side of heart but the valve in the left side was very small. They thought he might be able to have a different surgery that would give him function in both sides of the heart but he had a heart attack going under GA for his second open heart surgery.

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Original poster
Pancakepipsqueak · 20/02/2023 19:26

@Bekindbekind not sure I explained that right I just got excited some knew what HLHS is ha. He was on the HLHS spectrum but the left side of his heart was quite substantial which was a good thing but a hinderance too as the first surgery (Norwood) was a lot more complicated. He also had a never before seen lung condition.

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imnotwhoyouthinkiam · 20/02/2023 19:26

I'm so sorry for your loss.

How do you prefer your family to deal with the loss of Teddy? Do you like them to talk about him?

It's not exactly the same situation, but a relative of mine had stillborn twins. I never met them and wasn't invited to the funeral. All of which is fine, they chose to have immediate family only.

But it means I've never really known what to say to them about the babies either. So I don't say anything which feels wrong.

AnotherCountryMummy · 20/02/2023 19:29

I dont have any questions, but I just wanted to say that I'm so sorry for the loss of your son.

Original poster
Pancakepipsqueak · 20/02/2023 19:32

@imnotwhoyouthinkiam I talk about him and reference him. I have a picture up of him at my work and I welcome comments and questions about him. I get teary sometimes and that’s ok. I don’t want anyone to ignore him.
my advice would always be to take their lead and don’t shy away from the conversation if they start it. Also I hate it when every conversation about Teddy is serious or sad. Some happy and fun things happened too, whether that be in pregnancy (his kicking dance parties whenever I went in for monitoring), birth (easiest and calmest birth and such a calming and protective atmosphere from the midwife who held off the NICU doctors with the incubator so I could hold him and kiss and cuddle him), and in the hospital (the nurses cheered the first time he got to do tummy time which was delayed because of his scar on his chest).
even when things end in tragedy the story often has light, loving moments and it does well to talk about them too.

OP posts:
Idratherbepaddleboarding · 20/02/2023 19:52

I don’t have a question but just wanted to say that you sound like a lovely mum to both of your children.

NK346f2849X127d8bca260 · 20/02/2023 19:54

What a lovely name your little boy had. I did wonder if it was HLHS. My teen dd was diagnosed with a CHD (ARCA) a few years ago.
Did you still worry about your daughter after the fetal scan and was she checked after birth?

Kernackered · 20/02/2023 19:57

I'm sorry for your loss and that you had to go through that. Which hospital were you at? I'm also a heart mum ❤️

Original poster
Pancakepipsqueak · 20/02/2023 19:57

@Idratherbepaddleboarding thank you (and also I too would rather be paddle boarding)
@NK346f2849X127d8bca260 I did worry throughout the entire pregnancy and when she was born. The midwives and doctors were very patient and a doctor did a full review before she was discharged and they also referred her for an echo at 8 weeks. She had a small heart which has recently closed. I think by that point I was a bit desensitised to holes in the heart (I know they can be serious) so I never thought too much of it.
i hope your daughter is well (anomalous right coronary artery??)

OP posts:
Original poster
Pancakepipsqueak · 20/02/2023 19:59

@Kernackered we were at Leeds - fantastic team. Love the nurses and consultants and surgeons there and still speak to some of them.
me and my children’s dad lived in the sick children trust house across the road for the 6 months. We got home for 3 days.

OP posts:
Original poster
Pancakepipsqueak · 20/02/2023 19:59

@Kernackered hope your heart warrior is safe and well.

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Willdenytothedeath · 20/02/2023 20:02

I hope this doesn't sound creepy, but I'm fairly sure I remember you from Mumsnet when he was born and little. I remembered his name as it was so lovely, and it was so sad when he passed away. I remembered reading something about the heart condition he had recently, and thought of him.

I'm glad that life has brought you another child, and that your are able to share your memories of Teddy with her.