Option to have Medical Termination following diagnosis of CDH

[Sunstone]

Hi,

I had my 20 week scan two days ago and to my horror it has turned out to be the worst day of my life.

My little boy has been diagnosed as having left sided Congenital diaphragmatic hernia (CDH). This alone gave us a survival rate of 60% but following another scan with a fetal medicine consultant it has been established that my little boys stomach and lower bowel are in the centre of his chest cavity and has pushed his heart over to the right side of his body as well as the consultant has grave concerns that his heart is not normal and his lung to brain ratio is at the lower end of the scale considerably dropping his survival chances even to full term.

To me at the time the choice was simple to save my little boy going through any undue stress I would have a medical termination. I also have a 3.5 year old who has an unclassified lung condition, moderately severe tracheomalacia and is on full time oxygen, it seemed unfair to add to the strain that we already ave on us as a family.

I have been reading up on CDH and seeing the stories of CDH survivors and now the guilt is setting in .. am I doing the right thing by all involved? I know he has no chance, but should I still let nature take its course or should I end the misery for all involved now?

I know in my heart that it would be a miricle if he went full term and even if he did and had the surgery to correct the hernia and put all his bits back in the right place it is highly unlikely he will ever be able to breath for himself due to lack of lung development let alone the fact that his heart is not normal and the consultant cannot see 4 chambers or vessels .. how he is still alive now I don't know.

I guess I need some reassurance.

The medical termination could happen as early as next week after I have had an amnio (to establish if its a cromazonal problem for future pregnancies or if we have truely just been unlucky).

Many thanks for your understanding.

Marie

Hi,

I'm so sorry you're going through this.

You and your partner are the only ones who can make this choice and it must be an awful situation to be in. I don't really have any advice apart from to say have you been put in touch with these people
www.arc-uk.org/

They offer support and information to people in your position. They're meant to be very good.

Don't know what else to say. Just so sorry.

I don't have any advice either, I just read your thread, and tried to put myself in your position.
Very difficult choice for you both to make.
Only the two of you can decide what to do?
Thought I would reply, to wish you all the best, and good luck xx

I am so sorry you are going through this.

I found out that my first son had a terminal condition during my five month scan (Patau's syndrome, which is rarely survivable, and other health problems indicated that my baby would not be one of those who did live for a while).

It is a terrible decision to have to make. We opted to have a termination and I have mostly felt that we did the right thing. The occasional wobble is only normal I think. I know someone else who decided to let nature take its course, which was the right thing for them to do too. I KNEW that that was not right for me, DH, or our son however.

It could help to clarify your thinking if you did contact ARC, I hear they are excellent.

Keep posting here, sadly lots have been through similar (it always surprises me how many ).

Am really sorry you are having to face this.

I can only speak for myself but I think if I was in any doubts i would ask for a second opinion. I have no expertise in this area but do recall seeing a tv programme a few years ago about a child who had what sounds like a very similar condition, they operated on her whilst she was in utero (it was one of the london teaching hospitals- sorry cant temember which one). Basically they 'placed'something down the baby's windpipe which pushed the internal organs back into the correct position to some extent and this allowed the lungs to deveop much more normally. Once the baby was born they were able to actually repair the hernia and re-position the bowel, stomach etc.

It may be that you feel that this wouldn't be an option for you but if you are even asking the quetion, it may help you face whatever decision you make if you feel you have fully explored the options.

All the best

I am sorry you have had such a shock.

Don't take any notice of what anyone else would do as you are the one that has to live with your choice.

I get what you mean about letting nature take her course as we decided to carry on with our pregnancy as we felt 1 minute was better than nothing with our baby.

Ring the ante-natal results help line, they are really lovely.

Sunstone, you don't sound sure of your decision at all (who would be, I guess?). I think that is a very big problem, because whatever decision you make it is one you will live with forever.

Can I suggest that you take a few weeks? At this stage, your Medical Termination would be pretty much the same procedurally in the next few weeks. I think you probably need to have a little while to explore the options, perhaps get some more concrete information about your baby's condition and prognosis.

I am sorry you are having to make such a difficult choice.

One of my friends had a baby girl with anencephaly (missing forebrain), and had the same options as you. She chose to carry her to term, and treasured 3 hours with her little girl before she died.

So sorry to hear your news.

Like HumphreyCobbler we decided to end our first pg with DS1 after he was identified as having patau's. He had several abnormalities that were identitfied at the 20 week scan and confirmed after an amino. It was the hardest decision we've ever had to make but I know we made the right decision for us, including DS. As other's have suggested ARC are a great resource which can help whatever you decide to do.

I've never heard of Arc and think I will definitely be giving them a call .. so thanks, without you guys I wouldn't have known about them.

I've spoken to my husband tonight about my fears ... and if I am honest i think in my heart I know it is the right decision but I am just so scared about going through the procedure that the guilt i'm feeling is almost a convineance .. to not have to face the hard times.

Thank you all ... I keep telling myself everything happens for a reason.

I was thinking about you earlier. Glad you posted again.

If you want to know anything about the procedure, just ask.