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baby died of hyperplastic left heart Lock Rss

does anyone had to deal with hyperplastic left heart, ?
i would like to be able to write / email others in my situation.

my baby twin girl only lived for 2 days, of hyperplastic left heart.
7 months ago.

i found out at 20 weeks,
and ive been grieving since then.
My daughter had a hypoplastic left heart aswell as some other heart deformities. I was 24 + 5 days pregnant when i was induced and my little girl was stillborn. She was so perfect it was hard to believe anything could be wrong with her.

I found out the week before she became an angel that she was sick - I understand the pain you feel and would love to chat to you if you feel like it.

You can pm me or I'll chat to you on here if you'd like.

Hope all is well with the other twin and your enjoying your baby


Sally
I lost my daughter to hlhs too, it almost seems another lifetime ago for me now she would have been having her 10th bday next week.
I found out at my 18-20 week scan, my little angel was born at full term and survived for just 4 days.
Hi

I am so sorry to hear about your loss. May your angels fly high.

My son has a CHD, Tetralogy of fallot with a VSD, Pulmonary Artesia and MAPCA's he has had two OHS and his next one will be in the next 3 months.

I'm not sure if you are aware of the support HeartKids Australia can provide you. They have family support coordinators in most capital cities and some regional towns. You may like to contact then to have a chat with about your loss. There details are at www.heartkids.org.au

They is also a large CHD support group on facebook for both CHD warriors and angels. One group is at http://www.facebook.com/home.php?#!/home.php?sk=group_161620673857127 and there is also a group of HLHS parents on another page on facebook but I am not sure what it is.

I hope this helps and heart hugs to you.

Ally

Ally,

I just wanted to say thank you for your kind words and I hope that everything goes well with your sons next operation.

Hope he and your family have a wonderful christmas.

Sally

Ally,

I just wanted to say thank you for your kind words and I hope that everything goes well with your sons next operation.

Hope he and your family have a wonderful christmas.

Sally


Sally your welcome I'm happy to chat any time.

Hi

My son was born with HLHS and he just turned 3 years old! There is still such a sad fatality rate with HLHS and CHD in general. This month is CHD awareness month.

Thinking of all those who have lost little ones to HLHS and CHD.
Hello everyone,

Firstly I am so sorry to hear that you have had to go through something so terrible as this and at the same time it is welcoming to hear that miracles do happen in these cases.

I'm 22 weeks now and found out on Monday that my baby could have hlhs but still have to wait until next Thursday to know for sure. It's driving me insane knowing how long I have to wait to either find out something thats just going to rip my heart out or bring great relief. The place I had my scan done has a history of detecting and not being able to see organs properly, as with my first pregnancy I was told that my baby boy could have 2 right kidneys and after another scan at the hospital it turned out to be nothing.

I don't know if I should prepare myself for the worst or hold onto that little bit of hope that is there. I don't want to be told the worst just like all mothers wouldn't want to. I've spent the last few days crying my eyes out reading stories and information on the internet and have many many mixed feelings. Its good to have a better understanding but am now confronted with what to do should it come down to the worst. It also helps to know that some bubs do pull through and live normal lives, that helps so much, but it hurts twice as bad to know that some bubs don't make it and I could have another story to add to theirs.

Was anyone else in this situation where you didn't know for sure until you had another scan? They have also said on the report that this is the only abnormality found, did any of your bubs only have hlhs or other conditions aswell?

Any response would be greatly welcomed as I think it will help to know others experiences.

Thank you so much,
kc. xxxx
My baby has HLHS and I am 23 weeks pregnant now. Would any of you be able to tell me where you had your babies, if you had the surgeries done, how your experience was with it. Please, I would love any words right now. A lot of the information I have been reading and the few stories that are posted on the Australian websites never have a happy ending, I can't seem to find anything that tells of those that are still living with the diagnosis now.
We are flying to Brisbane next week sometime, once they've contacted us to have further scans and discussions.
I would really appreciate anyone's advice, thank you so much
KC, i'm so sorry i haven't replied to you sooner, i haven't been on here in a very long time.

My heart goes out to you and your family. No mother should ever be put in the position you are now and i'm so so sorry. It's so grossly unfair.

My daughter Finley had no chance, that was made very clear to me when I went and had the scan done at the top womens/childrens hospital here in perth. She was never going to make it, she had other heart issues aswell as her kidneys had not formed properly. Still it was the hardest decision of my life being medically induced to miscarriage and i still wonder if when i meet her that she will be okay with what we did.

I have to believe that was the right decision for our family at the time, we had 4 other children to think about ranging from 1 to 12. It was so unfair the whole situation.

I know that there is a group on FB called HLHS - hope or something like that that can give you some guidance. I have seen on there people in their late 20's and going strong.

I will pray for your little one and whatever decision you make will be the right one for you and your baby.

Good luck and if you every ever want to talk pm me and I'll send you my email address.

Sally xx
KC, I have sent you a PM.

Thank you Sally and aussiefrog for sharing your experiences. I'm sorry that you have had to go through this also. It's not fair that anyone would have to go through this, I had never even known about such a condition until now.
From the time that we found out our baby had HLHS to now has seemed to go by so quickly, it sometimes feels like I've missed a month. We flew down to Brisbane towards the end of February to meet with a cardiologist. He was really helpful in explaining everything about the condition and the options that we had. About the surgeries, the procedures and how they worked and the long term effects that we would face if they came about.
It is a lot different having such things explained to you by someone in the profession compared to reading personal stories and experiences. The decision that we had to make honestly sucked either way. Life will never be the same as there will always be something missing and there is nothing that will ever be able to fill that missing.
We chose not to have the surgeries. We both knew that wasn't what we wanted for our baby.
I was induced at 24 weeks 4 days and I had our beautiful baby boy on the 2nd March. He is perfect and looked completely normal, we named him Ayden James. I love him so much and miss him more and more as the days go by. I know that the decision we made was the right one for us, it's just really really hard.
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