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Julia and Maddie

Last Reviewed 10/04/2017

By swan uk member, Julia Tavener-Webb

I had been with Maddie’s dad for about a year when I found out I was pregnant.  I already had three daughters from a previous marriage.

The pregnancy went along smoothly, no sickness, no concerns. As Maddie was my fourth there was a lot of room in there - Maddie was very active and kept turning into the transverse position despite being medically turned twice. The doctors decided it would be safer to give me a C-section.

It all went well and Maddie was born 7lb 6oz on 6 March 2006 at 10.42am.

I had a bad feeling from the start as Maddie was very sleepy. She barely woke for feeds, however, she passed all the newborn tests. As the weeks went on I voiced my concerns to the health visitor. It took until Maddie was four months old and her weight was not going up for her to listen. She referred her to the GP who just said ‘oh she's just small’ and fobbed us off.

I knew something was not right she was so floppy, couldn't roll or weight-bear; she was like a newborn. Finally at 10 months old and a lot of nagging I received an outpatient’s appointment at the University Hospital of Wales.  

We went in for what we thought was a routine consultation and the professor took one look at my little girl and admitted her immediately. She was in for three months of tests and investigations. Her weight plummeted so she had to be fed through a tube.

I had three other girls who needed me but I stayed with Maddie every night. I also found out that I was pregnant again. That, with the worry of all these tests made these the hardest few months of my life.

They never found out why Maddie was so small or so delayed - blood, brain scans, x-rays all came back normal. Maddie finally got a taste for Weetabix and slowly she started to eat and gain enough weight to come home, but out journey was just beginning. Years of physio, dieticians, orthotics, speech therapists, paediatricians and therapy were to come.

Maddie is 11 now and still in nappies. She has daily injections to help her grow, she has ADHD and hypermobility but still nobody knows why.

She is functioning at about the level of a two-year-old. Maddie didn't walk until she was four. She can say three to four word sentences now if she's in the mood (usually asking for food) - the very thing that was such a struggle in the beginning.

She's a happy, stubborn, independent little girl and I wouldn't have her any other way.

A diagnosis wouldn't change Maddie but I'd like to know for her little brother (full sibling) for when he has children.

I worry for her future when I'm not here but any parent with any child I'm sure does the same. She has amazing siblings who adore her so I know she will be OK.

Maddie took part in the DDD (Deciphering Developmental Disorders) Study but after four years nothing significant was found.

Having Maddie has certainly made me a better person and it has taught me and her siblings to never judge anybody.

I feel very guilty daily for the amount of my time and energy Maddie takes which leaves so much less for my other four children. It was too much for my relationship to survive, but we are both in new relationships now and he is a better dad not being with us.

WE WANT TO HEAR FROM YOU. IF YOU'D LIKE TO SHARE YOUR STORY PLEASE EMAIL US: 

INFO@UNDIAGNOSED.ORG.UK

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