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confirmed on Thursday that our little prince has Hypoplastic Left Heart Syndrome HLHS 😢

(26 Posts)
1moretime Sat 11-Jun-16 14:28:19

We went for our 20 week scan last Monday all excited to see our little baby again. Our hearts were crushed when the Sonographer stopped scanning & looked at me & said there appears to be a problem with the baby's heart. We were rused into a consultation room where we sat waiting for an appointment to be referred to see a specialist & to have an indepth scan done.

So Thursday the room was full 4 cardiac specialists, a midwife & a liason nurse. My head was all over the place & just felt like I was having a bad dream. After what seemed like forever & hearing alot of medical Jargon we were told our baby has Hypoplastic Left Heart Syndrome, basically half a heart.
They explained that there was a blockage that had prevented the left ventricle from developing & the tube (artery not sure on proper name) that pumps blood around the body is very narrow.
She drew us a diagram to explain it was at that moment my whole life came crushing down on me. In all the years iv been with my hubby iv never ever saw him in such a state. It just didn't seem fair - Why us We are not bad people!!
They seemed pretty negative about it all & we were offered a termination. We declined it. Everyone deserves a chance & we are going to give our little boy just that!! He defied the odds to be here so he is special already. It's going to be a long tough struggle as our little boy will need 3 open heart surgeries to help him survive.

Sorry for the long post. Is there anyone out there who has gone / is goinh through this??

Thank you xx

PathOfLeastResitance Sat 11-Jun-16 14:40:35

Didn't want to leave you unanswered. I've not been through this but I wish all three of you strength and love. Xx

1moretime Sat 11-Jun-16 14:44:58

Thank you pathofleastxx Means alot xx

Lilacpink40 Sat 11-Jun-16 14:48:08

I know adults whom have survived multiple heart surgeries for congenital problems (pacemaker and valve replacements). I also know a young adult with CF whom successfully had a heart and lungs transplant. I know these are adults, but surgery can be amazing.

I'd have done same thing as you and said I'd continue, but would be realistic that this is going to be hardest thing to ever go through. Good luckflowers

SauvignonPlonker Sat 11-Jun-16 14:53:46

A friend of the family's DD has this, but it wasn't discovered till after birth (it was about 10 years ago, in the days before 20-week scans were routine). She had heart surgery very soon after birth, but unfortunately her condition had deteriorated within a few years & she required a heart transplant, age 2/3.

She then had a period of good health for about 8 years, but unfortunately has developed cancer secondary to the immunosuppressive drugs. She is a lovely girl but has another battle ahead, sadly.

I'm so sorry you've had such a shock. & news you weren't expecting. Wishing you & your DD all the best.

leopardspice Sat 11-Jun-16 14:56:12

Hi op flowers I'm a mum of a dd with a cardiac condition. I don't want to write an essay on here I'm going to PM you x

Jodie1982 Sat 11-Jun-16 14:56:32

Sorry I have no helpful advice. I just want to wish your little prince all the best wishes. And send you a Cyber hug (( ))

RainbowInACloud Sat 11-Jun-16 15:00:41

Sorry to hear you've had such awful news. I can't offer any advice regarding the condition but I wish you strength and courage.
Take a pen and paper with you next time so you ask all the questions you need to and record all the answers so you can review them later. Hugs x

ASISAYNOTASIDO Sat 11-Jun-16 15:13:04

That is such a shock for you both and such a difficult thing to handle. I don't have any useful advice but am thinking of youflowers

1moretime Sat 11-Jun-16 15:41:34

Thank you so much for your replys Means alot 💖

Clare18 Sun 12-Jun-16 09:49:24

So sorry to hear. I don't have any advice but just wanted to wish you strength flowers

dynevoran Sun 12-Jun-16 09:52:16

So sorry to hear. My friends daughter had a different cardiac condition and had heart surgery at 2 months old. She recovered so quickly. I hope your baby does too. flowers

Beansprout30 Sun 12-Jun-16 12:16:44

So sorry you are having to face this, I have no advice but want to wish you strength and hope for your little one. He's lucky to have such loving parents who are willing to give him a chance flowers

Melissaelx Sun 12-Jun-16 12:58:55

So sorry to hear this!
My dd is now 3 and has HLHS
Every journey is different and definately not an easy one
My daughter has had her first 2 open hearts and her last one will be next year some time
She is amazing and doing so well if you saw her you wouldn't think she is any different to a child with a healthy heart I was given the option to terminate but I wanted to give her a chance and she proved she was a fighter

New to this I only made my account on here because I couldn't ignore your post

1moretime Sun 12-Jun-16 16:15:57

Thank you all so much for your replys. I kept having ups and downs. My DH is being so strongv& trying to do different thinge to take my mind off it but nothing us helping!! I keep thinking is it more cruel to put a child through this?

melissaelx thank you so much it really means alot to hear from some one who has been through this. I'm so scared & just can't think positive right now. I have a DS just turned 7 & I know our lives are gonna change & I don't want to upset him. We live 2 and half hours away from the hospital my little boy will be getting treated & it's gonna be so hard on us all.
How did you get through your pregnancy? All the excitement has gone all I feel is fear & dread now. Xx

1moretime Sun 12-Jun-16 16:16:52

When was your DD allowed home? I keep thinking that il never beable to rest even when at home xx

Beansprout30 Sun 12-Jun-16 16:41:39

You are still going to have a beautiful baby, I hope you are able to get some excitement back xx

gingerbreadmanm Sun 12-Jun-16 16:55:20

Hi op. I had been thinking about you. I'm so sorry about you sons diagnosis. They can do something though and that is what you should focus on.

I havent experience of this condition but my son was diagnosed with a severe form of pffd which would have resulted in him having his leg amputated (and lots of other corrective surgery).

We chose to carry on with the pregnancy. I remember the turmoil over whether we were doing the right thing or not. I questioned myself every single day. So i just wanted to say i completely understand the difficulty you are facing.

Hope you are managing ok flowers

1moretime Sun 12-Jun-16 17:06:59

beansprout I know I feel so selfish 😯

gingerbreadmanm it's just so hard. My head is bouncing. I keep wakening through night crying & just feel so upset.
I should be thankful that there is somethung they can do I just don't know if I can cope seeing my little baby go through it all. I'm scared that even after his 3 ops I still won't be able to rest. It just seems so unfair we are not bad people.

Melissaelx Sun 12-Jun-16 17:13:41

I have pm you xx

Beansprout30 Sun 12-Jun-16 18:52:53

You are not being selfish at all 1more xx

SleepymrsE Sun 12-Jun-16 19:22:53

Just come across your thread 1more, I remember you from the hyperemesis support group. I am so sorry to hear the news from your scan wasn't good. I cannot imagine what you are going through. I don't have any experience of it but didn't want to read and not post. Wishing you all the best for the pregnancy and beyond.

gingerbreadmanm Sun 12-Jun-16 21:48:29

Theyre all the same feelings i had. I kept thinking how will we get through the ops. How will we manage work, decide who goes to the hospital, how will i cope with him at home when he was recovering.

I just kept telling myself even if a baby is born completely healthy thats not to say you would never end up in a similar situation as they grow.

I did feel incredibly selfish too. As if i was doing it because i was so desperate for a baby.

Unfortunately the matter was taken out of our hands but now i am sooooo glad i gave him the chance. It gives me great comfort thinking i did everything i could for him.

Your baby will have all the love care and support in the world. With increasing medical discoveries who knows what life they can have ahead of them?

Kariana Mon 13-Jun-16 08:21:35

I'm so sorry to hear this flowers. I have no advice but just wanted to wish you strength and love.

wispaxmas Mon 13-Jun-16 11:48:02

I do know of one woman in a baby group I'm in whose son has HLHS, they found out at the 20 wk scan and he is just a year old now, but has had a couple successful surgeries so far and everyone is optimistic!

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