Ivy'v Story What care and support is available for those with deletion 22q11 syndrome?


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Poppy Sarah Irons-Little

PoppyShe was here, the much-awaited birth. We now had a beautiful daughter, born on 22nd February 2000, weighing a healthy 7lb 10 oz. Sister to Sam (9), Daisy (7), Bradley (13) and not forgetting Zoe (11). Everyone was so excited, the children were overwhelmed by her, she was so tiny; it was love at first cuddle for everyone!!

There I was in the maternity ward, big smiles all round, the doctor came in to discharge us; started doing all the necessary testing, when he came to the "clickety hip" test I grimaced it looked so painful; by the look on his face "we'd just failed". An appointment was made for five weeks later, in the baby clinic to seean orthopaedic consultant - "My first taste of life with Poppy."

Coming home was great, tried to breast-feed Poppy, I had enough milk to feed the whole of a maternity wing, but was she interested? No! I decided long before that there was no point in getting stressed over it. Just go to Mothercare and buy some bottles - "easy". Unfortunately not. The feeding became increasingly harder to do - one ounce here, an ounce an hour later. Very itsy bitsy. Alarm bells started to ring for me. Unfortunately not for anyone else. When I took her to be weighed they said, "Maybe that's the way she is", or "Oh well, we can't all have a healthy appetite". Being a bit more suspicious of my daughter's inability to consume any quantity of milk, I asked to see the doctors. Looking disgusted they made me an emergency appointment.
Telling the doctor all my concerns, and her looking blankly back at me, and probably thinking 'the anxious mother line'. She listened to Poppy's heart, and her attitude changed, "I think you should go to the hospital." Relieved and in tears I phoned John (Poppy's Dad) She was diagnosed with a VSD - and sent for lots of test. Luckily it didn't require surgery at that moment, might still do in time. I was so happy, I know that sounds strange, at least I knew why she was feeding so poorly...

Back to the consultant at the hospital, to be told that wouldn't cause the feeding problems that we were experiencing. I heart broken. What was it then?

On seeing the orthopaedic consultant, Poppy was put in a frame, making the next 15 weeks very difficult, but through it all she was growing in to a beautiful, happy girl. And the bond, though very strong at birth was becoming increasingly stronger.

The consultant at the hospital, at my request, had a scan of her kidneys done, my worry was that it is hereditary on John's side to have polysistc kidneys. I waited for the results, the consultant said there was only one kidney!!

In shock and baffled by what they were telling me - they said there were too many underlying problems and they wanted to do a chromosome test. The results would take 6 weeks to come through. They would refer me to a dietician in the meantime and do more tests on her kidneys.

In the meantime things had been hectic, we were moving house, and the phone call came, the consultant wanted to see us at the hospital. I knew the results had come back. But it was the day I was supposed to move - what a disaster! We went to the hospital at 10 am. It was like the firing line. Two consultants were there to meet us. I knew (mother's intuition) that the results were bad. I originally thought that it was cerebral palsy as she had a weaker side and the development, physically, was delayed. But sitting there, they handed me a bit of paper with:

"22q11.2 deletion

DiGeorge Syndrome"

It was like a foreign language. I'd never had, or needed to know of, anything like this before. One of the consultants said, "I think I'll remember this forever. We're so sorry. We should have listened. Sometimes mothers know best." The tears started falling and didn't stop for about a week. The people who moved out of our new house must have thought I had really lost it, there was me in floods of tears.

Getting it Together

PoppyRight. I had the diagnosis; things started moving. More tests. More Appointments. At least we were winning. Poppy finally had an N-G tube at 5 months old, which was brilliant, though it was a hassle to keep the thing in. We spent lots of afternoons at the children's ward having the tube passed again.

Plans were made to have a gastrostomy done at Great Ormond Street on the 15th December at 10 months old. Since then we've never looked back. We've had a big fight with reflux at night, though with a magnificent community nurse, we've near enough sussed it, with erythromycin twice a day and thickening her night feed with "Thick + Easy" as she has it on a pump feed.

At the moment, developmentally, she is delayed. She's now a year old (can't believe it's gone so fast!) We take her to physiotherapy once a week; she is now sitting unaided, each step is a very much-appreciated one. She weighs 16lbs and each ounce is a hurdle crossed.

Through all this we've learnt a lot - never take her or our other children for granted - and in all honesty - I wouldn't change her for the world.

Poppy is a blessing and is loved by all who meet her.