Hypoplastic Left Heart Syndrome and more

Today is my first time on this website but I found it very helpful to read what others have wrote.  I was 5 months pregnant when I found out my baby son had Hypoplastic left Heart syndrome after many tests they came back and said his lungs were also bad and that this was a lethal pregnancy and he was incompatible with life.  We had to enduce the pregnancy at 5 1/2 months on May 25, 2006.  We had a burial a week later and it seemed to help some with the grief.  Its was amazing how perfect he was on the outside.  He looked so much like his dad already and weighed 1 1lb 3oz and lived for about 20 minutes.  Has anybody been through this similar situation?  They say I have a small chance of this happening again in future pregnancies--should I let this stop me from trying again?  My doctor says if we want to try again we can once my bleeding stops.  Well its been two weeks and my bleeding is almost gone-do you think it is to soon?

[AnnieBrooke]

I am so sorry for your heartbreaking loss.  A dear friend of mine also had a 5-month birth (stillborn) and she talked about how perfect the baby was; a marvel.  If you only have a small chance of having this happen again, and of course they will be monitoring closely, then if it were me I wouldn't hesitate.  Pregnancies are so fragile early on and so many things can happen that if we took counsel of our fears, we would never try at all!  It depends on your assessment of your own mental readiness and your husband's too.  You might want time to rest emotionally, or you might not need it.  Ladies on this forum will often say they got pregnant right away after a m/c, such as before they even had a period, so you are probably physically ready if your doctor didn't object.  Again, please accept my condolences at the loss of your child, and good luck for the future! (((HUGS))) Annie

[Lilwing]

Thank you Annie for your reply.  It helps so much to talk about it and I think this website will be very beneficial to me.

[AnnieBrooke]

For all its funkiness and funny arguments that spring up occasionally, and its repetitions, it's a really nice site because the ladies who post here are so tremendously good-hearted, and you can almost always find someone who has had something exactly like your problem happen to her. (Don't forget to check the archives too.) Did you read the hilarious postings below about what various women did when they were in pregnancy-induced horrible moods?  I laughed and laughed. Again, all the best, it sounds like you'll do fine.  Annie.

[jgirl34]

I'm truly sprry to hear about your loss. I think that trying again wouldn't hurt anything. Like you said it's only a small percent and sometimes things just happen. Hate to even say it like that, but that's our only understading yanno. If you are ready then go for it. We're all here for support if you need us to talk to whenever!! God Bless you, you will be in my prayers! :)

[myproblem]

That must have been so hard. Please don't let it stop you from trying again. Unless it was a major genetic risk, your chances of a normal baby are very good. I know one lady who had her first two babies die right after birth. Somehow she made it through, and had a healthy little girl. Have faith.

[odinsrumor]

So sorry for your loss.  My first child was born with Truncus arteriossus needing a heart transplant to live.  He made it 4 weeks and then passed away.  As for getting pregnant again I was told to wait at least one period. I did and got pregnant the very next month.  My advise is not to listen to any one who has advise about pregnancy after losing a child and do what feels right between you and your husband.  Its upseting to get comments like "you cant replase him"  most of us who have lost a child know this.  Once I was pregnant again it felt healing....and I hope it does for you also.  
After I lost Hunter I went to nursing school one month later and now I work in the NICU with infant waiting for a heart transplant.  I feel like I can help the mothers a little through the whole horrible process by being understanding.
AS for the chances of having another child with a heart problem....I have been told by my doctor that the normal population has a 1% chance of having a child with a heart problem and when you have already had a child with a heart problem then your chances of having another only increases to 3%.  I have had three other children since then and they are all healthy.  You really do appreciate life in a whole new light when you have been through the experience of losing your child.  
It never gets easier to think of him as time goes on you just learn to find happiness in other things....and the pain doesnt feel as severe as the years go by, but you still hurt :(
Just curious.....why could he not have had a heart -lung transplant?  What was his diagnosis of his lungs?
Hang in there
Odinsrumor

[jillybean1977]

I was moved by your story. My daughter was diagnosed at 22 weeks with severe hypoplastic left heart syndrome and we later found out she also had lung problems. I want to cry when i read your story as it is almost identical to yours. We actually decided to have a medical termination as things didn't look good for little Faith, but we did have options. Sometimes i wonder if she would have survived if we had put her through all the surgery? I don't know, what i do know is that i felt desperate at the time.I remember not wanting to leave her perfect little body in the hospital, and also trying to keep her warm (Faith was still born, she died coming out) how irrational, but she was my baby! At home, I didnt know how to cope and i got drunk a few times and was a real mess. My 2 year old son helped but he did keep asking where the beby had gone (he has stopped asking now!) Gradually, over the year i feel stronger although it is coming up to xmas time now and a year since she died so i am a bit emotional. I do still get sad but like you, want to try again soon. All I will say is do what your instinct tells you. Always back your feelings and go with them. Good luck and i wish you all the luck and happiness in the world XXX

[andre94]

To Lilwing and the ladies who posted your stories

It breaks my heart to read about your experience with HLHS child.

Andre, my 1st child and only son, was diagnosed with HLHS at 16 weeks.  We were given 4 weeks to make a decision as we were told that he will not survive the growth in my womb and if he does, he will not live for long when he is born.  That was 1994.  We decided we want to give him an identity and be part of our fmaily even if it was for 3 days.

Andre arrived and our life changed.  He brought much joy and happines in his borrowed time of 15 years when doctors say he wont last more than 3-7 days.  He was his 2 younger sisters' best friend and pillar.

Though a roller coaster ride throughout, it was worth the fight.  Andre never had to succumb to any surgery and lived on love and faith and had a full life.  We made sure he is treated like any ordinary child and went to normal a school though he could not partake in any outdoor activites.

God felt that Andre's work is done on earth and wanted him back in July this year.  We are devastated and at a loss that no words can describe. How we miss him.

I get me strength through religion as well as reading the books 'Love Beyond Life' and 'Our Children Forever'.  I feel these books gave me strength to walk through the unbeatable grieving path.  Days are dark and nights are painful.....

Have faith and believe that your little Angel is looking from above and that you will be blessed with a healthy child in your subsequent pregnancy.  Do not give up hope.  Like many said, a mother should not be given a 2nd time to have to go through the ordeal of having a HLHS child...it is too painful to bear....

[Brandixoxo]

My son was diagnosed at 20 weeks and im now 26 weeks along in my pregnancy. There is so much hope and a very good possible outcome for my son outside the womb. He will need to undergo 3 open heart surgery's before his 2nd birthday and the 1st is to be done 3 to 4 days after birth. He's going to be born at The Childrens Hospital of Philly aka (C.H.O.P) where the first surgery's for HLHS were performed. Other wise he's in good condition to say the least besides his little heart of course, but please parents of children with HLHS don't EVER give up[ hope and for heavens sake don't even put the word (termination) of your pregnancy in your mouth or in your head it's murder! Give your baby the chance to fight and live it's the least you can do for them! Pray to God to save your baby, leave it in the Loards hands and your prayer shall be herd. God Bless

[KamiMB1]

I had a daughter born with hypoplastic left heart syndrome on Oct 15 2010. She was diagnosed @ 5mos, same as yours. That was her only problem, so we continued with the birth, with hopes the opeartion would help her future. After her birth the 1st surgery was done after 11 days. Her heart was so large there was complications with the closing of her chest. To make a long story short, she died after a month on Nov 27 2010. She was beautiful 7lbs 8oz. I was adament we wouldn't do it again, too scared it would happen again. I must say, I rethought it and my husband and I have just recently found out we were expecting again. Go for it!!!

[tassibi]

If you are having trouble coping with your loss, or regret your medical termination, I think you can find healing by visiting a group such as
Rachel's Vineyard (http://www.rachelsvineyard.org/)
or Project Rachel (http://hopeafterabortion.com/)

[tassibi]

You should try to have a child. I must however say that if by "inducing the pregnancy", you mean that the doctor aborted your child, or deliberately hastened his death, this was not the right thing to do. As you deal with mourning your child and conceiving any other children, know the Lord is watching over you and that you can trust in Him.

[preggers123893]

Hello,

We were possibly diagnosed with hlhs  yesterday at our ultrasound appointment. We are going to Childrens Hospital for the Echo to hopefully un-confirm the diagnosis. Worst case scenario if it is HLHS we want to be prepared. You said that you brought your son home  after they told you he had 3 days to live and he survived until 15 without any surgery? Did he ever need surgery? We are unsure if we want to put our son or daughter through all that pain. I appreciate any feedback... Thanks!