Jacqui, mother of Abigail (8) who was diagnosed with Turner Syndrome before birth
My name is Jacqui and I was 20 weeks pregnant when I found out that my baby had Turner Syndrome. I found out on Christmas Eve and of course could find no information on Turner syndrome, particularly due to the time of year.
Counselling and support
It was only in the New Year that I could begin finding out about my baby’s condition and what this would mean for her. I had genetic counselling at Guys Hospital and was put in touch with the Child Growth Foundation and subsequently Arlene of the Turner Group.
It was here, and from Arlene, that I found out the most up to date, accurate information and support.
A baby with Turner Syndrome
It was, to be honest, a difficult first year with Abigail as she had heart surgery at the age of just 2 days and subsequently quite severe feeding problems. I was in and out of hospital with Abigail for most of the first year of her life, mainly with “failure to thrive” problems. Abi was tube fed for the first 2 years of her life and even so, was still sick a lot of the time. We eventually discovered that Abi was more suited to a pre-digested milk which was gentler on her tummy. After this, things became easier and later, with the help of a speech therapist, we eventually managed to get her to eat and drink normally.
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Feet and other problems
Another feature of Turners is lymphodema of the hands and feet, but particularly the feet. Abi had special shoes as conventional shoes did not fit her feet, but they were lovely and other mums would often ask me where I had bought them! Abi did suffer serveral ear infections and has suffered particularly with glue ear. She has had grommets inserted 3 times. Abi also has long sight and squint and wears glasses to help with this.
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Abi also had some problems with separation, ie. she would not play in a play pen, she would not sleep in a cot and would scream if you left the room.
8 years on
Finally, I would just like to say that Abigail is now 8 and has blossomed into a chatty, sunny, confident, funny little girl. She is always smiling and laughing; she is always singing and dancing; she never really says anything unkind and is really loving and affectionate. She really is one of the nicest people I know, an absolute joy!
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Last updated: April 2008
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