Fiona & Mike

Fiona and Mike’s daughter was diagnosed with an exomphalos*. After birth she developed several complications and was in hospital for the first 10 months of her life. But she has recovered well and is now 7 years old and thriving at school.

Fiona and her husband Mike were very excited to be expecting their second child. Delays in starting antenatal care meant that they did not have a scan until 20 weeks which revealed their daughter had an exomphalos*. They were referred to a specialist surgical hospital for further scans and tests during the rest of Fiona’s pregnancy. They discussed with surgeons whether to have a natural delivery or caesarean, and because the exomphalos was not too large, planned for a natural delivery. Fiona went into labour at 37 weeks and gave birth to her daughter naturally. She was immediately transferred to the specialist hospital where she had a silo fitted and surgeons planned a staged repair which involved putting a mesh over the top of the wound once the organs had been put back inside the abdomen. She did well for the first couple of weeks, but then she started to have cardiac arrests, her body seemingly unable to cope with the speed of the closure.

Their daughter was transferred to neonatal intensive care unit (NICU)* and had several furthers arrests over the following months. In the short term doctors identified that she was allergic to milk so they put her on total parenteral nutrition (TPN)* but it was not until she was 7 months old that the real cause of the cardiac episodes was diagnosed. She had a condition called tracheomalacia*, or floppy windpipe, which would need further surgery to correct. Although she came home briefly, she regularly needed emergency admission back into hospital when her oxygen levels dropped. She had surgery on her windpipe when she was 7 months old, and although she remained in hospital for a further 3 months, this operation did resolve her feeding and breathing issues.

At the time of the interview Fiona and Mike’s daughter was 7 years old and attending primary school. She was discharged home age 10 months old, and went back in for her final exomphalos closure surgery just before she started school. She continues to experience some symptoms associated with the exomphalos, such as hypermobility, but it is not affecting her daily quality of life at all. She has made up all the developmental ground she missed in the early months, and is thriving at school and home.

*Exomphalos
An abdominal wall defect, that occurs when the baby’s tummy wall does not develop fully in the womb. Some of the baby’s intestines and sometimes other organs such as the liver, develop outside the tummy and are covered by the umbilical cord.

*Neonatal Intensive Care (NICU)
A unit for critically ill newborn babies and infants who need the highest level of nursing and medical care. Babies in NICU often require support for their breathing. Those undergoing major surgery will often be looked after in a NICU.

*(Total) Parenteral Nutrition (TPN)
TPN is nutrition is delivered directly to the blood via a vein.

Fiona and Mike said they both had emotional breakdowns at some stage during the 10 months their daughter was in hospital. There are things they wish they could forget.

Mike: Yeah, and I mean again, I gloss over the fact that I think, before this, probably a couple of months before this, we both probably had emotional breakdowns at some point or other. Because it’s just, I think after about three months of it, I’sd had enough and we had a big fight on the phone, at one point, and I think I smashed up my phone as a result just because you’sre so stressed and tense towards her. So it’s starting it’s starting to take its toll on us as well. At that stage, because it’s just a long term. You go through two or three weeks to two or three months. And each time, it seems like a ridiculous amount of time to be in hospital.

Yeah and this is.

Mike: two or three months, if we’sd known if we’sd know we’sd be there ultimately for ten months then you just wouldn’st, you’sd have cracked, at that point. Knowing that you’sve got that much more ahead of you and actually, worse times than you’sve already experienced pretty bad times so.

Fiona: And also we were [inaudible speech] I used to see [son] once a week, I think when I was and that was really hard. And it was almost like we were two separate families with you and [son] and then it was.

Mike: Yeah, and he

Fiona: [daughter] and I.

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Fiona and Mike described their eight year old daughter as a girl who was thriving despite her really rocky start in life.

So just describe to me, you know, the journey that she’s made from eighteen months to the little girl she is now?

Mike: She’s lovely.

Fiona: Yes.

Mike: She she’s very, very bright.

Fiona: Very headstrong.

Yes [laughs].

Mike: And headstrong so, whereas we’sre both really sort of fairly shrinking violet type people. We’sre not.

Fiona: [son] is the same.

Mike: And [son] is very similar to us, yeah. He’s a lovely boy but he’s very shy. [Daughter] is completely the opposite. She’s more of an extrovert. She’s very, as I say, she’s very bright and this is the thing that we’sre quite pleased about because she’s there was, obviously, a risk of brain damage a couple of times. Because and that was one problem. Luckily, I think the worst time, was she was so young at the time. That any damage that was done, the brain just went a different route. So she would have developed again but we put loads of effort into stimulating her mind. And so she was played music. There was a chap who used to come and play. He was

Fiona: He was a music teacher.

Mike: Yeah, he was a music teacher. He wasn’st a music therapist or anything along those lines.

No, no.

Mike: But I think he was very interested in that theory.

Fiona: I think on his lunch break, he taught at the hospital school and in his lunch break he would find children in the hospital. To play music to.

Mike: In intensive care.

Fiona: And in the ward and he used to come and see [daughter].

Fiona: Once a week. And she really benefited from that.

Mike: Yeah.

Fiona: And as she got older. She would shake a rattle with him.

Yeah.

Fiona: Which was lovely.

Mike: Even when she was out of it. The intensive care, you could see from the monitors that there’sd be a notable spike. Whilst this was going on.

Yeah, yeah.

Mike: Which was interesting and I think this is why he was so keen to do it in that situation as well because he could see the results.

Yeah.

Mike: But yeah, so he stimulated her and she’s very bright as a result.

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Fiona and Mike said the first thing they did was go online. It took a while to get beyond the facts and figures and find parent experiences too.

And where had where had you gathered your information from during that week? I mean you’sd obviously been told some details in the hospital.

Mike: It was very basic information there and then really I think the first thing we did was we went home and had a look online.

Okay.

Mike: To try and find out where that information is because we didn’st know where else really to look because the only, the appointment we had at the next hospital, which was a week away later, that was the one where we were going to be told everything about it all.

Yes.

Mike: So meanwhile, you can’st help but try and find out more.

Yeah.

Mike: Yeah and statistics, it’s all statistics and medical the ways of dealing with the situation and it was all a bit cold and black and white. There’s no real experiences on there that we found, initially.

Yeah, so that was in that was a few years ago, wasn’st it.

Mike: Yeah.

In two thousand and six.

Mike: Yes.

And so what sort of sites were you looking at? Can you remember in those early days, where you managed to find information?

Mike: Just.

Fiona: It was medical publications wasn’st it, I think.

Yeah.

Mike: Yes, it’s all the medical information so you Google the name and that’s all that really comes up and most of it dated back to the mid-eighties.

Fiona: But then we did come across GEEPS and that.

Mike: Yeah.

Fiona: Helped to see the experiences.

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Mike and Fiona remember how they were told the news of their daughter’s exomphalos. The doctor couldn’st say how severe it was and referred them to another hospital.

Mike: Yeah, I think I think that’s the bit where, I don’st know if it’s a bit like an adrenalin reaction, cause you you, it’s too early to cry because you don’st know really what’s going on and we sort of go into some sort of shock where we start giggling. We, we just go a bit silly. We’sre all nervous and so I remember the same thing happened later on as well but it’s a strange reaction. You don’st really know what to do so we just, you know, we waited for the next, I think it was the lady that came in, wasn’st it?

Fiona: Yeah and we took we took into, we were taken into another room and she told us more about exomphalos*. And she could, she said that there was, you know, ranges of severity from just a small hernia, which they would be able to fix at the hospital, to more serious surgery, which we’sd need to go to the specialist hospital for.

Mike: That, I suppose that was quite a good thing in that, that was within fifteen minutes of actually having a scan, we knew.

Fiona: Yes.

Mike: Straight away what that there was actually a plan. They actually knew and we were sort of sent onto the next hospital’s care.

Fiona: We knew we’sd need to go to a specialist fetal medicine unit appointment.

So that that was the plan that they laid out for you there?

Fiona: Yes. We would need to go for a more detailed scan.

Mike: There was a week or so in between, wasn’st there.

Fiona: Yeah, which was.

Mike: That was the bit that was a really long time, so a week seems like a month, because, you know, you’sve got no information in that in that meanwhile.

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