Ronan O’Donnell

Born February 28th, 1997

Ronans Story

Hello, my name is Neasa O’Donnell and on the 28th February 1998 Ronan was born by vaccum delivery but showing no complications or problems. Both my husband (Paddy) and myself felt that Ronan had a large head but he seemed in good health.

At 6 months old he began showing signs of being unwell and for some time had been waking up in fits of screams during the night, we also felt that his head seemed to be growing at an unusual rate. For the following 5 months we had great difficulties in having Ronan diagnosed and finally at 11 months old (19th January 1998) following a great deal of support and help from a wonderful GP, Ronan had a CT scan which immediately showed a very large AV malformation in the Vein of Galen. At this point Ronan was also diagnosed with borderline cardiac failure. The heart condition had to be first addressed before any medical treatment could be considered.

On the 17th March 1998 (St Patrick’s Day in Ireland!) Ronan had his first embolization procedure under Dr Pierre Lasjaunais and Dr Wendy Taylor in C.H.U. Paris. It was a huge success and a second procedure followed in January 1999 under the same 2 doctors, again in Paris.

Since then Ronan (now almost 5 years old)has visited Dr Wendy Taylor every 6 months at Great Ormond Street Hospital for follow up assessment. He has a mild paralysis to the left side and has speech impediment but he is in great form and is a very happy little boy who started in main stream schooling in September where he is doing really well.

We have a great deal to be grateful for given the fact that here in Ireland he was given 6 months to live but we never gave up and pushed to get help.

Ronan has an older brother ( Caolan – 8 yrs old) and younger twin brothers ( Tiarnan and Darragh – 3 yrs old) who are all in perfect health.

If you would ever like to get in touch please do so at 00353 61 334997 after 6pm. It is always good to talk to others believe me, you may be feeling alone and helpless but there is support there, we are here and have gone through this also.

Take care,
Neasa

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About vogadmin

Vein of Galen UK is a website dedicated to families and sufferers of Vein of Galen malformation all over the world. We provide information and support for families affected by this condition.
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