Interview AN41

Brief Outline:

Their son was diagnosed with Tricuspid Atresia, a large VSD, ASD, small right ventricle & small pulmonary artery. Treatment' Modified BT Shunt & Atrial Septostomy at 24 hrs old. Cardiac catheters & further operations planned when their child is older. Current Medication' diuretics, aspirin, sytron, anti-reflux and lactulose. More can be found from this interview with CH03 on our site: 'parents of children with congenital heart disease' 

Background:

Age at Interview: 3 months old. Age at diagnosis: During pregnancy (21 weeks). Parents marital status: Married. Occupation: Mother-Market Research Adviser, Father-Accountant. No other children. The family live close to a specialist hospital.

They were given useful information about the condition and about termination, but it was difficult to have to read about termination.

At that stage we were presented with a series of choices. Whether to have a termination, whether to carry on with the pregnancy, and if we did carry on with the pregnancy whether to go for what they call 'comfort care', which is letting the disease take its natural course, having the baby and then letting the baby die a natural death in the first few days of life. 

And we weren't put under any pressure to decide which was obviously quite, you know, a very good thing, but in a way sometimes you want somebody to help you decide because it's such a horrible decision to be faced with. But being told that there are three options and all three are valid and all three are fine for different people I just found was really, really difficult.'.

We were given various pieces of literature. We were given a book from one of the support groups, a little booklet from Left Heart Matters which explains about Hypoplastic Left Heart and explains some of the sort of 'what does this mean' kind of questions. We were also given from the hospital a booklet called Antenatal Results and Choices which is all about if you know, what sort of things to think about if you want to have a termination.

And were they helpful, these particular leaflets?

Yeah, they were very helpful but I found that I couldn't read the Antenatal Results and Choices' one without crying. I just, you know, it was just a horrible booklet because of the subject matter it's got to cover. And as I say, I just couldn't read it without just crying virtually all the way through because it was just so awful to think about.  

And especially because of the stage of pregnancy I was at, it would have meant, you know, the baby had a chance of being born alive. So it was a case of they have to actually, in fact, kill the baby inside you and then you deliver it and I just thought it was just so awful to think about.
 

Although it was horrible at the time, having her son's heart condition diagnosed before birth probably saved his life.

If it is an antenatal diagnosis, what my emotions were at first were I didn't want to know. I didn't want to have been told this piece of information, because that then gave me a decision to make that I didn't want to have to make, but with hindsight that antenatal diagnosis actually saved his life.  

If he hadn't had that diagnosis he would have been born at a different hospital where they didn't have any paediatric support at all. So, you know, it just would have been horrible. And because he was that unstable, in an intensive care environment without any support at all I don't know what would have happened.  

So I think in terms of advice to somebody who's had an antenatal diagnosis, it's absolutely horrible at the time, but it is the best thing to know because then that gives you the time to prepare emotionally, but really importantly it means that the right medical support is on hand for your baby the minute that they're born. And they're monitored from the minute that they're born, which gives them the best possible chance in life.