Dangerfield, Hope

It was at the 21-week scan that a problem was picked up. I hadn’t heard of Diaphragmatic Hernia before, and realised that it was serious, even though the sonographer didn’t say too much other than not to worry. I was referred to Kings College Hospital as a matter of urgency as ‘they were more used to things like this’, but in the meantime was given a copy of the ‘Contact a Family’ book.

I attended the Harris Birthright Centre at King’s two days later, with my partner, by which time I was really worried and was convinced that I would lose the baby. Mr Nicolaides saw me and arranged for all relevant checks on the heart and performed an amniocentesis to ensure that there were no genetic problems. He recommended that I go ahead with the pregnancy as the baby had a 50/50 chance of survival. After being convinced that I was losing the baby, 50/50 sounded promising, so we decided to go ahead with the pregnancy.

A few days later I contacted the support group Patches (having no access to the Internet I hadn’t heard of Cherubs), where the lady I spoke to was extremely supportive. This support, and the fact that I’d decided to be positive trying to think of it like a late pregnancy test, helped me though the following 17 weeks. I attended regular check-ups at King’s, where I was told that other than the CDH everything else was developing normally, and knowing people struggling with IVF and others having stillborn children made me feel that carrying a 50/50 baby wasn’t the worst thing that could happen. I tried not to think beyond the 38 weeks when I was booked to be induced, and although it wasn’t easy, managed to stay relatively positive about the experience. After saying ‘I hope that the this baby is OK’ for the umpteenth time, we mentioned about the fact that Hope was actually a name, so decided that should the baby be a girl we would call her Hope – we didn’t really have a male equivalent.

At 38 weeks I was induced at Kings, and after spending a full day with little success, then problems with the baby’s heartbeat, an emergency caesarean was performed and a screaming baby girl delivered – Hope – who was taken to intensive care before we could see her properly. Although John spent most of the night with her, I didn’t get to see her until about 24 hours later. Then I was taken into intensive care after being told that, due to her crying, which we thought was a good thing, she had a lung bleed which was potentially fatal.

At six days old and after 3 ‘false starts’, Hope was operated on. She was 26 days old (and again after 2 attempts) before she could breathe without the ventilator. Just before she came off the ventilator, doctors had discovered that her stomach was incapable of keeping anything down because the reflux was so bad, so she would require a second operation – a nissen fundoplication. This was performed at six weeks, and a gastrostomy tube also fitted.

The day after Boxing Day, when she was just over 2 months old, Hope was transferred to Wexham Park – our local hospital - where she stayed for about 5 weeks whilst they tried to sort out her feeding problems. We took her and her ‘tube’ home when Hope was about 13 weeks old. The following week we took her for a check up at Kings, where she vomited whilst in the waiting room. As there were concerns that it may be a result of lung problems we were readmitted straight away, and spent another 2 weeks there whilst breathing problems were ruled out.

The following months were difficult, as although Hope was tube fed and had a nissen, she still appeared to have severe reflux and would vomit regularly. The local nurse almost refused to give her her baby injections as she was retching that much!

In the end our local consultant tried a course of steroids followed by an inhaler, which – together with 3 further lots of medication – seemed to stop the retching and vomiting.

In February of last year I found out I was pregnant and after having an early abnormality scan at 16 weeks, was able to ‘enjoy’ a normal pregnancy. Although, I didn’t tell people until after the 21 week scan.

Hope was 21 months old and still tube fed – although she would take small quantities of milk though a bottle whilst she was going off to sleep and try the odd crisp or piece of chocolate. In the end the dietician told us to cut the night feeds and give her the tube milk in larger quantities at meal times and only feed her through the tube once we’d tried feeding her normally. Jamie (Hope’s brother) was born in September. The doctors knew that some progress with feeding would need to be made. This seemed to work, but just before last Christmas when Hope was 26 months old, she had a stomach upset. So, instead of tube milk I poured electrolyte mix down the tube and I don’t know what they contain, but Hope seemed to develop an appetite – eating full bags of Wotsits and Jaffa cakes. I spoke to the dietician, who basically told me that her eating junk food was better than her getting a good mix of vitamins through the tube.

By the end of March we, and all the doctors, were confident enough to have the tube removed. Although she doesn’t eat huge amounts of food and needs encouragement to eat sensibly, she is gaining weight, and doesn’t seem any different to any other fussy toddler. We’ve just come back from holiday where it was really refreshing to have a little girl begging for ice cream, chocolate and ‘juicy’. With regards to her lungs, she has not required any oxygen support since leaving hospital at 13 weeks old. Unless you saw her with her top off you would not think there was anything wrong with her other than her being on the skinny side. She can run faster than I can and loves her little brother – even though she likes to fight with him regularly.


Written by Hopes, mom, Julie Dangerfield (Great Britain)
2005