Hypoplastic Left Heart Syndrome

[garfield]

Hi,

My wife is 5 months pregnant and has just had her mandatory 18-20 week ultrasound and we have been told our baby has Hypoplastic Left Heart Syndrome, in layman's terms our baby's heart hasn't developed properly on the left side. as you can imagine we are both devastated at the news and so are the unborn baby's brother (9) and sister (7).

The reason I'm posting this thread is to find anyone else who has a family member or know of someone who has had to endure this horrible news in their life. we have been given an option to terminate the pregnancy or have an option for surgery when the baby is born. we saw a specialist today at the westmead children's hospital with a cardiac specialist and he has explained that the baby would need an operation at birth, at three months and then at years if the baby were to survive the first two.

its a dangerous operation and there are no guarantees that the baby would survive the first operation and what quality of life the baby would have in the future. There are no late teens or 20 year olds in our society that are living proof that its possible for them to lead a normal life or explain the difficulties they now are faced with either in the near to late future or on a daily basis, becaus e these operations have only been performed over the last 10 - 15 years. we have been given the option to have the baby and follow up with major heart surgery or terminate the pregnancy, the hard thing is as any parent we don't want to give up on our unborn child with exploring all of what science has to offer and hope for him but we don't want to have him endure many difficult operations which he may not come out of - or even lose him 3, 4 or 5 years from now it would hurt even more. we don't know what to do and feel as though either way we're going to be so hurt and have done the wrong thing. It would be nice to be able to talk with someone who has dealt with this heart problem and maybe make some more sense of it all and hopefully learn from their experiences.

Much thanks
Geoff

[silentC]

Can't imagine the turmoil you're going through. Would be an incredibly difficult decision to make. I don't know whether this site will help or not: http://www.lhm.org.uk/ there are some stories there from parents of kids born with this problem.

[Wood Borer]

I appreciate your openess on this personal family matter.

Whatever the decison you both make, I'm sure it will be right decision.

Like Silent, I can only imagine your position.

[dazzler]

Sorry to hear your predicament.

There is no medical right or wrong answer, no morally right or wrong answer, but what ever you decide its the right answer :)

best of luck

[tea lady]

Can only imagine your predicament. So late in the pregnancy to be making these decisions. Hesitate to give advice but I would go through with operations if the problem is only physical and there is a brain and a person in there. Some time with him/her would be better than no time. But that is only me. Saying goodbye at anytime would be harder than I could imagine.

[RufflyRustic]

I pray you are able to never give up while there is life and therefore, hope.

Wendy

[JMB]

Really sorry for the pain you and your family are going through. Wishing you strength to deal with whatever happens.

[garfield]

I really appreciate all your thoughts and prayers. we've cried a bucket load of tears in the last few days since we've found out and cried alot more today as we think through what is best for baby. Do we give him a chance at life to experience things that we take for granted, to feel his brothers and sisters love mum and dads love - or will we put him through immense pain and hurt for a short time - long time only to lose him at some time in the future it hurts more than I can explain and would never wish this on anyone. on this it really puts life into prospective and I thanks God for our two beautiful kids we have now. Its times like this that you realize that money and material things just don't matter. I have a loving wife, two beautiful children who we love more than anything in this world and a baby in a womb who my heart breaks and cries for. when I look at my two healthy kids I feel so rich and blessed and feel nothing else matters until I think of how helpless and powerless I feel for our unborn child who I love so much and have never met and It hurts to think that I may never meet.

Give your kids a big kiss and hold them and tell them you love them and never take them for granted.

[prozac]

When a person passes away it is generally accepted that they have left their human form leaving it but a vessel in which their spirit travelled through life.

When is the instant then that this spirit enters its vessel to begin its life journey? Is it when born or is it the second that the first cell forms? If you knew this you would know your answer but instead you have to rely on your best judgement, your inner sense to guide you.

Either choice will come with some misgivings but there is no wrong one.

I wish you strength of mind to know that you have chosen right for you and your family, and that you should have no regrets.

prozac

[dazzler]

When a person passes away it is generally accepted that they have left their human form leaving it but a vessel in which their spirit travelled through life.

When is the instant then that this spirit enters its vessel to begin its life journey? Is it when born or is it the second that the first cell forms? If you knew this you would know your answer but instead you have to rely on your best judgement, your inner sense to guide you.

Either choice will come with some misgivings but there is no wrong one.

I wish you strength of mind to know that you have chosen right for you and your family, and that you should have no regrets.

prozac


Very well said.

[kellrob]

Hi,
I have a friend in Melbourne with a twelve year old son with this condition.
He has lived a wonderful life so far! They were given the same devastating information as yourselves during the pregnancy.
Please contact the Cardiology department at the Royal Childrens Hospital in Melbourne and ask to be put on to some parents who are dealing with this condition. I personally know two families, both children have had two and three surgeries so far. The second child is about six I think.
The RCH is the only hospital in Australia equipped to deal with HLH Syndrome surgery so this is definately the place to direct your questions.
Goodluck with your journey.

[kenileen]

Hi, I was sent 2 weeks ago to for an ultrasound to investigate what my GP thought was a lump in my lower left abdomin only to be told it wasn't a lump, it was a baby and that I was 22 weeks pregnant. Already have a 13yr old son and a 9yr old daughter, this was an absolute shocking but pleasant surprise. I had no pregnancy symptoms at all, a hormonal imbalance from childhood means I don't get my periods regularly, and hadn't had one in over 12mths, this is normal. Anyway just last week, we were told to see a pediatric oncologist to redo the ultrasound because of inconclusive results from the 1st ultrasound, our elation also turned to devastation when told our unborn son has HLHS, I was just browsing the net to find out info and came across this blog, I live in Melbourne and will certainly let you know any new info I might be able to find out. All I can say is, be faithful in the medical professionals. I am being positive, it's hard and emotionally draining but all I think of is this soul I am nurturing in my womb who deserves to get all that chances available to him, if we stand to lose him than at least we can say we did all we could. Would love to hear from your progress. All the very best for you and us.

[artme]

Garfield and Kenilleen I cant' imagine how either of you must have felt on hearing the news associated with your pregnacies.
We probably all take most things for granted, trouble free pregnancies and healthy children being amongst them.
All I can say to you both is to get the best advice you can and follow it. We are all lucky to live in such medically advanced times and things are always improving. Take what comfort you can from that thought and the thoughts of your friends and families and know that we all feel for you both and wish you well.

[garfield]

Hi, I was sent 2 weeks ago to for an ultrasound to investigate what my GP thought was a lump in my lower left abdomin only to be told it wasn't a lump, it was a baby and that I was 22 weeks pregnant. Already have a 13yr old son and a 9yr old daughter, this was an absolute shocking but pleasant surprise. I had no pregnancy symptoms at all, a hormonal imbalance from childhood means I don't get my periods regularly, and hadn't had one in over 12mths, this is normal. Anyway just last week, we were told to see a pediatric oncologist to redo the ultrasound because of inconclusive results from the 1st ultrasound, our elation also turned to devastation when told our unborn son has HLHS, I was just browsing the net to find out info and came across this blog, I live in Melbourne and will certainly let you know any new info I might be able to find out. All I can say is, be faithful in the medical professionals. I am being positive, it's hard and emotionally draining but all I think of is this soul I am nurturing in my womb who deserves to get all that chances available to him, if we stand to lose him than at least we can say we did all we could. Would love to hear from your progress. All the very best for you and us.


Hi Kenileen,

Firstly let me say how sorry I am to hear of the devastating news you have received.

I'm actually at work at the moment and have only just seen your reply to my thread, I've only in the last couple of days started getting back into this forum as my wife and I have been through a bit lately. I'll reply more later but unfortunately we decided to terminate the pregnancy Kenileen. We had a funeral for our little boy as my wife was 20 weeks. I found a couple of sites while we were trying to find out more about HLHS that we found very helpful... I'll also give you the link for a memory I wrote for our dear little boy Jermain.

http://www.lhm.org.uk/categoryrender.asp?categoryid=3480&ccid=139

http://www.lhm.org.uk/categoryRender.asp?categoryID=3538&cCID=586

http://www.babysamson.com/

[tea lady]

So sorry to hear you news, Garfield and kenileen. My heart goes out to you both.

[prozac]

I feel so sorry for your misfortune Garfield and the terrible trial you have endured. You have made the decision that I would have had I been in your position. The unending stress of keeping a little soul going having brought him into the world, and the anguish questioning yourself if you were right in inflicting such a life upon him would rest very heavily upon me. Would your other children miss out because of the extra effort required, and would it have torn at your family in other ways too?

I admire you for making that choice. Raising a family and staying married in this day and age is hard enough. I hope that once the grief has ebbed you will all feel comfortable knowing that you saved him from a life of suffering.

prozac

[munruben]

Garfield, I am so sorry to hear of the loss of your beautiful baby and my heart goes out to you and your family. No person should have to go through what you have been through and I admire the strength and courage it must have taken to reach your decision. One thing is for sure, this episode in your life will be with you forever and I am sure that what you have experience will bring you, as a family, even closer together than ever before and this is the good thing that has come out of this tragedy. Cherish the memory of your little baby and live your life to its full. You have a lovely family and life has to go on. Love and cherish your children and your wife and remember that out of this came some good. Your baby didn't die in vain. God bless you.

[garfield]

Thank you all for your thoughts and for your kind words it means a lot to me and my family. I didn't follow up the thread after my last post as It was the night before my wife and I were to see the Doctor and let him know of our decision. My wife and I have been so hurt by this and we have our reasons for our decision. We will never know if we made the right one, I don't think there is a right one, but know that for the rest of our lives he will always be a part of us and a piece of our hearts died that day, and he is always a part of our family.

My wife and I pray for you and your unborn baby Kenileen. We hope that everything works out for your family.

P.S Kenileen if you would like to talk or ask questions either through this forum or would like to converse by phone, just PM me and I'll pass on our details if you'd like.
God bless.

[Lean Myth]

Friends of mine are also in the same situation - unborn baby with Hypoplastic Left Heart Syndrome. Their baby is due soon and are about to go to Melbourne since they have been advised it has the best team for the operations needed and after care. It has been very difficult for them, plus this additional move. They leave Sydney on Saturday, but won't know until Thursday if there is accommadtion for them at Ronald McDonald house. They have been in contact with other families with the same problem. If you wish to talk to them contact me and I will pass on you details. Regards Lean Myth

[dazzler]

You made the right decision and no-one can ever say otherwise. All the best for the future. :)

[ian]

Geoff

who is your pediatric cardiologist? Ours is Gary Sholler – we really like him – after 8 years we've progressed to the stage where we only have to see him every two years
who is the proposed surgeon? Ours was called Chard (if I recall correctly) we only saw him two or three times

Chard was at Westmead in 1999, Sholler still practices there

our son was diagnosed with coatortion of the aorta about 5 months into the pregnacy — he was the first or second case detected inutero.
Similar timing of the diagnosis to you

I wont go into all the gory details that coatortion of the aorta involves — esentially our son's aorta came out of his heart, fed blood to the head and arms and then was totally blocked.
the process for us was:
move maternity hospital so that we were in the same place as the specialst
specialist needs to see kid within 2 hours of birth
after this the options for us were:
the kid goes to neonatal intensive care at Westmeade within hours of birth (or gets the full medical recovery treatment — chopper, doctors and nurses, breathing tubes, etc — if we delayed by even 12 hours),
then into surgery within 48 hours of birth

or we could hold a funeral after about 10 days later.

The surgey was risky (from memory the success rate was about 70%, with the risk improving the sooner after birth it occured) and depending on how bad the condition was we could be going back for more surgery every few years as our son grew.
Luckily we haven't needed follow up surgery, but our son has a small residual risk of catestropic aortic embalisim and he needs to take antibiotics where there's a risk of contracting a blood borne bacterial infection.

The hardest part was we only got to really hold our son after he had been prepped for surgery and then only because the blood delivery was late. Till then he'd been hooked up in an intensve care box.
The one thing I regret is not thinking to take a photo of that georguos kid wrapped up in insulation (so he could be chilled for surgery) with just his face showing.

Our bigest problem was who we told — it was stressful enough for us parents without having to deal with the aunts and grandparents' anxieties.

The other complication was friends who were due around when we were.
It's hard to appreciate their joy when you're looking at life or death.
This is where understanding experienced friends really helped in passing on the hint to tone it down.



You've got a really tough decision to make and only you and your wife can make it.


but if you would like to talk some more send me a PM and I'll give you my numbers



ian

[ian]

and only now do I notice the date on your original post ...

[prozac]

and only now do I notice the date on your original post ...

Makes no difference ian. If the experience that you share helps someone else who is simply lurking then time is of no consequence. Thanks for sharing.

prozac

[garfield]

Geoff

who is your pediatric cardiologist? Ours is Gary Sholler – we really like him – after 8 years we've progressed to the stage where we only have to see him every two years
who is the proposed surgeon? Ours was called Chard (if I recall correctly) we only saw him two or three times

Chard was at Westmead in 1999, Sholler still practices there

our son was diagnosed with coatortion of the aorta about 5 months into the pregnacy — he was the first or second case detected inutero.
Similar timing of the diagnosis to you

I wont go into all the gory details that coatortion of the aorta involves — esentially our son's aorta came out of his heart, fed blood to the head and arms and then was totally blocked.
the process for us was:
move maternity hospital so that we were in the same place as the specialst
specialist needs to see kid within 2 hours of birth
after this the options for us were:
the kid goes to neonatal intensive care at Westmeade within hours of birth (or gets the full medical recovery treatment — chopper, doctors and nurses, breathing tubes, etc — if we delayed by even 12 hours),
then into surgery within 48 hours of birth

or we could hold a funeral after about 10 days later.

The surgey was risky (from memory the success rate was about 70%, with the risk improving the sooner after birth it occured) and depending on how bad the condition was we could be going back for more surgery every few years as our son grew.
Luckily we haven't needed follow up surgery, but our son has a small residual risk of catestropic aortic embalisim and he needs to take antibiotics where there's a risk of contracting a blood borne bacterial infection.

The hardest part was we only got to really hold our son after he had been prepped for surgery and then only because the blood delivery was late. Till then he'd been hooked up in an intensve care box.
The one thing I regret is not thinking to take a photo of that georguos kid wrapped up in insulation (so he could be chilled for surgery) with just his face showing.

Our bigest problem was who we told — it was stressful enough for us parents without having to deal with the aunts and grandparents' anxieties.

The other complication was friends who were due around when we were.
It's hard to appreciate their joy when you're looking at life or death.
This is where understanding experienced friends really helped in passing on the hint to tone it down.



You've got a really tough decision to make and only you and your wife can make it.


but if you would like to talk some more send me a PM and I'll give you my numbers



ian

I appreciate that you took the time to write that Ian, and and the offer. Your post that will be valuable to anyone else that has this unfortunate situation happen to them, as it will more than likely show up in a google search. Good to hear your son is doing great and doesn't need frequent visits to the hospital, or to doctors.

Thanks for sharing your experience with us.

Thanks
Geoff

[ian]

Geoff

thanks for your kind words

Even after 9+ years I still get a bit emoptional when I think back to that period.


ian

[garfield]

Hi Ian,

I'll bet you do mate, it's just really good to hear things worked out for your son and your family.

The one thing that I think of every day is when I have been reading where these amazing baby's and kids have been getting through these operations, and as glad as i am that things have been successful for all those involved, I get upset and think should we have done the same for our son and gave him a chance..... it really hurts, but we just don't know.

For anyone who is looking for a great site with links, help and information and an incredible little boy with HLHS visit the bellow website. I have been keeping an eye on this story since i found the site back when I was looking for information on HLHS.

http://www.babysamson.com/

[bridgetgidget]

Garfield, please understand that I am so sorry you had to face such a difficult decision. I was pregnant with my son back in 1995, and I didn't find out until he was 12 hours old.

My purpose of adding to this thread is not to make you feel bad, please, please, please understand this!! My purpose is to help anybody else out there who may have just found out they are pregnant with a baby with HLHS, and are googling for information about it. There are a lot of morbid statistics out there and it is easy to believe that nobody survives, and that if they do their quality of life is horrible.

If you go searching medical sites, this is what they would have you believe. Be warned that a lot of the statics are old, and out of date. I just recently got the internet in the house, so I wasn't bombarded with too much bad information. I would advise anyone to search support groups, not medical journals. I have done this in the past, and it is very depressing.

On another note, like I said my son is 12 years old, he just had a birthday. He's doing very well and he really enjoys his pet chickens and going to Camp Braveheart at Camp Twin Lakes. He even enjoys going to Six Flags and riding the roller coasters (though I suppose this is ill advised however, life is for living). He has an older sister, who does not have any medical conditions.

I will say that the first 4 years were difficult at times. Illnesses were sometimes serious, and we had some complications after the 2nd surgery, but overall he has done outstanding! God is with these children, on earth, or in Heaven. I would like to say that there are worse conditions that a child could have, and that all of us could loose our healthy children at any given time for any given reason. That being said, I remember praying to God to please just let me keep my child long enough to see him ride a bicycle. Then when he got old enough to do that, I remember praying that if he died right then it would have been harder on me than if he had died at birth. Now, I continue praying that he will live long enough to have a family of his own, and I get choked up praying to see him be a father, and the possibility that I never will.

But, you cannot live your life dwelling on the what if's, you have to take life one day at a time. And, if he were to die when he is 15, I would never wish that he had died at birth. No matter how painfull. Because he has been living a life, his life, the only life he has ever known. He has friends who have heart conditions, and friends who don't, and he enjoys our family, and we enjoy him. I could never imagine not ever having him in our life, and I would trade all the sorrow and grief of loosing him for these years that I have had with him.

And I promise, he is in no danger of loosing his life due to his heart any time soon. What does the future hold? Only God knows for sure, but there are young adults with HLHS, check out the adult congenial heart defect websites. Here is one: http://www.acha.org/.

When he was born back in 1996, we were told that the surgeries had only been out for 10 years, and that was 12 years ago!! See what I mean about old, or inacurate information? They are now doing the 3 staged surgeries differently then they were doing them when my son was born. The children undergoing the Norwood today have a better chance at survival then ever, and they are improving the operations all the time. The quality of life for these babies are even better now-a-days, and my son's quality of life is no different than that of his sister or his cousins.

There are some limitations, but not like some would have you believe. Trust me, I know plenty of teenagers with HLHS who live active lives. They may not be in football, or marathon runners, but they enjoy their lives, and they do get to run and play.

So, I would urge anybody who is facing the difficult decision of whether to have the baby or not, to please don't just trust the medical journals alone, they are but a part of the picture. And most of the studies are very old. Check out support groups, and other forums for parents. Join the forums and ask questions to the parents of these babies.

We live in Atlanta, Georgia and my son goes to Sibley Heart Center Cardioloy at Children's Healthcare of Atlanta. Even if you live far from Ga, you should google these names as well as Camp Twin Lakes, or Camp Braveheart.

If you google Choa, put Children's Healthcare of Atlanta heart to narrow your search. I would advise you to check out http://www.choa.org/default.aspx?id=247 for sibley heart center, and http://www.choa.org/default.aspx?id=5135 for Kids at Heart, a support group. Please check these out, even if you don't live in the US. They have the best up to date info around. You can also visit http://tchin.org/support_groups/index.htm for support groups in your country or local area. I went there today and some of the links are not up to date, but alot are, and the site itself is, just not some of the contancts. From the bottom of the page on this site yopu can find alot of information not just about HLHS, but about a variety of other CHD as well. I hope I will be able to help somebody out, either by these links, or just by our story. I coulld go on for pages, but i know I probably annoyed some with the length of this thread already. My appologies, This is the first time I've posted on a forum!! :doh:

[bridgetgidget]

I just thought I'd leave a quick note and invite anyone interested to take a look at my album. I have a few pictures of my family as well as some pictures of my son, who is 12 years old and has Hypoplastic Left Heart Syndrome. Maybe we could be an inspiration to somebody who has a young child with HLHS. Thanks!

[Kaz]

Hi Geoff,
Im new to this site I was just googling hyperplastic left heart and came across your story. I found myself in your position almost 6 years ago. my 19 wk scan revealed that my baby had hyperplastic left heart. I believe there can be different severities, in my babys case the right side was also undeveloped with small aorta and other vaulves etc. Being my first pregnancy we were heartbroken and I can sympathise with you and your partner. We made the hardest decision of my life and terminated at 20 wks. I was induced as a curet was not an option at this stage of pregnancy. I spent 4 days in labour and it seemed this baby did not want to give up!. I went home for a break from medication and the maternity ward and at my parents place gave birth to a baby girl. My dad was an ambulance officer so I felt I was in good hands.I can remember so clearly an overwhealming sense of peace which I believe was angels coming to take her. Believe it or not I felt happy that id had a baby girl. At the hospital we got to hold her and took pictures and named her Louise. She was beautiful, not knowing what my baby would look like was scarey,the nurses even dressed her in tiny knitted clothes and a bonnet for her head! she looked just like a tiny baby it was truely amazing. Still now I cry for her and what might have been but I feel I made the choice that was right for me. I did not want to leave my family and friends and move to Melbourne to live which was the only place they did the surgery knowing no one. I did not want my baby to endure so much pain and suffering nor did I want to go through that, given such a grim outlook. Now to some that might seem selfish but I dont regret my decision. I now have a 4 year old healthy girl and a 13 week old healthy baby boy. We had a plaque made up soon after louise was born and put it on a large rock we went and got from the bush and it has a special place in our garden. I look at it every day from my kitchen window. Whatever path you take it will be a journey that delivers you some pain. You just need to listen to your heart and do what feels right for you no matter what you do its gonna hurt. I hope my story helps you to feel that you are not alone. Love and light to you and your baby. Kaz,

[prozac]

Well said Kaz.

Bet it's cold up your way ATM. Is Dyamberin still in Wright hands?

[Kaz]

Yes a bit on the chilly side. Not sure about Wrights I'm a townie so not up to date on property owners but far as I know they are still there. How are you? I realised after I sent that you had decided against having the baby.

[prozac]

Hi Kaz, no I was not the original poster of this thread.