HPLS - Left heart syndrome

[Tegam]

There were times where I really lost it thinking I had done the wrong thing and what if the doctors got it wrong etc.

for you too hun, so sorry you have had to live through the last few months!

[Nicolabee]

Thank you Berry1 - I totally understand your comment "what if they got it wrong" - that is extremely frightening to me also (they assure me in our case this is not the case) - however I have read how things have been different at birth to that diagnosed during the early ultrasounds. Take comfort from the results, it sounds like they reaffirmed your decision.

I am totally torn at the moment - we have a tentative booking for a termination commencing Friday (the tablets) and induce labour on the Monday - we are under to obligation to proceed, but risk having to wait a week to 10 days after making a decision otherwise. (When I make up my mind, I need to do it "now")

We have gone through all the reasons why a termination makes sense for us - our two children at home while away with operations; what they would miss out on while caring for a child with additional needs (possibly special needs), our distance from Melbourne and specialty services (4 hours), our age, the risk to our unborn child at every turn - complications, infections - from the time it takes its first breath and that this is a palliative option - they will never be "fixed". I question whether I have the strength to watch my child go through so much - I look at my 6 year old and 3 year old and know how I would feel if something was to happen to them or if I were to lose them now.

BUT, then I look at our preliminary diagnosis - because the issue is now with the right ventricle, the risks associated with the first operation are 5% versus 25% with the left ventricle (installation of a stint - no heart bypass or reconstruction of aorta) - and that is if the operation is required. We then join HLHS babies with all the same risks and same operations and probable need for heart transplant. We have been told that there are usually no other associated problems with this abnormality, and have been cleared for genetic issues. Our baby is growing at the normal rate for 19 weeks gestation. Am I being selfish not giving our child a chance at life? Is it my right to take that away?

Had we gone into Friday, determined that we would do anything for this child, we would have been excited with the revised diagnosis.

I think I have a conflict of head and heart - but I can't yet make a decision with any real confidence (it changes daily).

DH is very rational and works through things logically - he is struggling with the choice, but sees termination as our best long term option - while I say that, dealing with a termination is another thing all together.

I am starting to question whether or not I will ever reach a point where I am at peace with my decision.

Thank you Rachel - I am hoping that speaking with the Psch will help us reach some conclusion with confidence.

Thank you everyone for your support.

[Tegam]

I am starting to question whether or not I will ever reach a point where I am at peace with my decision.

you are probably right.... to have a child with special needs (huge),to see what your other children have to miss out on because of this (huge), to add that extra stress to your marriage (huge), to have to live through an induction and a birth of a child that will 'look' perfect but know you made the decision to end the pregnancy (huge)...

All i know is either option will be hard on you and your family. There will be people that will not understand your decision no matter what you choose....

I know that there will be bad days, but i also know that you DO have the strength to get through this.... However much support you need, we are here for you!

[Berry1]

Tegam, thank you for your kind words.

Nicole, I have been really feeling for you and hope you are holding up ok. In terms of 'questioning whether you will come to a place of peace with your decision' I understand what you mean. In my situation, I wasn't so much 'at peace' because making that decision as a women who desperately wants that baby goes against your natural instincts, but I did come to a place where I knew it was the best thing to do for her. What really helped me cope afterwards was knowing that before we made the decision, we saw every specialist we could, did all the tests we could and explored every option and took into account the 'solid facts'. Also, getting support & understanding of my decision from those closest to me was really important, as I needed them to reassure me after the event. My husband was very rationale about the decision as well, it took me longer to get there, but we did it together, which is vitally important.

It's good that you are taking this week to think & talk about it and to see a psch, all really good steps. If you have any questions at all, please do ask. Obviously I can only offer advise from one perspective, but there are some great ladies here who can certainly give advise from the other, which is important. Hugs to you this week

[MistyFying]

Nicolabee I'm sorry you're in the midst of this right now

(installation of a stint - no heart bypass or reconstruction of aorta)

this is what my son had done when he was born. He had the stint at 3 days, and then underwent bypass surgery at 3 months to close some major holes in his heart. He recovered very quickly from the open heart surgery and was home in 10 days.

You asked what his prognosis is - I go back to his cardiologist once a year to check the repairs are growing with his body (the stint is synthetic). The cardiologist does an echo, takes blood pressure, checks circulation, height, weight etc to ensure everything is ok. He will only have to have more surgery if one of the repairs fails (they think this is very unlikely). He was in hospital for 3 months when he was born. We lived approx 70 mins from the hospital and I travelled up and back each day and my husband went in every night after work for a visit, and we had an 18 month old at home to look after. The 18 month old hasn't shown any real after-effects of the turmoil during that period of her life (just to reassure you that your other kids will be fine - don't let that weigh too heavily on your mind when making your decision).

I know just how awful it is to know there may be something wrong with your baby

[Nicolabee]

Berry1, you certainly sound as if you exhausted all possibilities before making your heartbreaking decision. That is what I wish to achieve, but still feel like I have a long way to go.

MistyFying, by what they have told us, it sounds as if your son's situation is different to ours - they are talking the stint, then the same 2 operations as for HLHS finishing with the Fontan, and all the long term issues of it being palliative and not a "fix". Is this the same path that you are on, or is it different? (as this sounds a lot more positive than that put forward to us)

I do wonder if what they see now in their ultrasounds is what they would see in another 4 weeks, let alone at birth? When we asked this they were quite adamant that it wont change.

DH and I have major issues at the moment with the thought of termination and burying a child whose life we will have brought to an end. Can we live with ourselves, and is that our right if there is a viable option for a somewhat healthy life, even if it does come with risks?

We still need to explore these options further. I am going to try and make contact with the cardiologist again at the RCH to answer our questions.

Thankyou everyone for your support and the sharing of your experiences, we really appreciate it.

Nicole

[nev]

i;m so sorry to hear about your little girl

[Rommy'sMummy]

Nicole, have you been told that it is a palliative and not repair pathway? I would hate to think you had this thought from me and not your cardiologist. There is such a great difference in the outcome and quality of life; as you can see Mistyfying's son and mine have quite different stories.

If you have been told of the longer term needs/issues that can make a significant difference to your decision. Also, the best information they can give you is based on todays technology. So my sons life expectancy is too short (for me to be comfortable with) but is based on todays ability not on what medical sicience will be able to offer us in the next decade or two. We have stored our sons stem cells from birth to be used for him when the science has the abilty to grow another heart for him.

I am not pro-life and would not dream of trying to sway you either way. I just am trying to offer you a longer term view - such a hard thing to get a hold of when you are confronted with the imediacy of your babies need for surgery soon after birth and time in hospt etc.

The last few years have been incredibly hard for us and at the same time as we have experienced great and terrible sorrow and despair we have also experience overwhelming joy and thankfulness for things that may appear trivial to others.

Rachel

[Rommy'sMummy]

DOH! Posted at the same time as you Nicole.

Our DS has a Fontan!