Ella Grace Warren

Ella’s Story

Born June 11th, 2002

Hi, I’m Lisa, Ella’s mom and here is her story…..

Ella Grace was born on June 11, 2002 weighing 8lbs 6oz. My pregnancy was pretty uneventful except for my triple screen test coming back with a 1 in 64 chance of Down Syndrome. My labor was induced and after 4 hours of the pushing stage there was no progress so they used forceps to get her out. They whisked her off to the baby unit and I didn’t get to see her until 3 hours later. My husband Brent was with her and said the nurses were really scrambling to stabilize her as her blood oxygen level went way down. It took about an hour to stabilize her and after that everything appeared normal.

4 months later we went to her regular checkup at the pediatricians, he measured her head, felt her fontanel and ordered a ultrasound for 2 days later. At her 2 month appointment he said he was keeping an eye on her head size as it was larger but he wasn’t too alarmed at that point. At 4 months her head circumference was 46cm and her fontanel was very firm. The ultrasound immediately showed the AVM and the hydrocephalus as a result of the malformation. Our pediatrician conferred with the pediatric neurosurgeon while we were still at the ultrasound and the neurosurgeon came to see us and ordered an MRI for a couple of days later. The MRI just confirmed was the ultrasound had shown. Ella’s AVM was the size of a large orange and she had severe hydrocephalus. The signs my husband and I saw was that at 4 months Ella was a very floppy/limp baby, had no head control, and would completely out of the blue scream inconsolably. We thought it was gas but now we think it was related to the AVM.

On December 6, 2002 at 6 months old Ella had her first and last embolization at the Toronto Hospital for Sick Children by Dr. K. terBrugge. Although Ella’s AVM was one of the largest they’ve seen there were a few really good things going for her. Her heart was functioning well and there were only 3 big feeder arteries to the malformation. They were able to block the malformation entirely. Her poor little body really went through the wringer and Dr. terBrugge likened it to “shutting off Niagra Falls in her head and now all that blood flow has to find other ways to drain”. Ella needed a blood transfusion a couple of days later. It was such a scary and helpless time. We were in Toronto for a total of 3 weeks before returning to Winnipeg.

It was touch and go for a few months afterward. Ella saw her neurosurgeon every week sometimes more to monitor her hydrocephalus. He was really hoping that her hydrocephalus would solve itself once the blood clot started to be reabsorbed.

In March 2003, 9 months old another MRI was done. Good news, the blood clot was a bit smaller and there seemed to be a little improvement with her hydrocephalus. Ella’s disposition has been fantastic. She is such a joy. At 8 months old, she finally has head control and at 11 months she is sitting on her own. We go to occupational/physiotherapy every other week and that really seems to help.

In June 2003, Ella is 1 year old. We had another MRI on the 23rd but we don’t know the results of that one yet. As we look back on this past year we had know idea this was in store for us but amazing blessings have come out of this ordeal of extreme highs and lows. Ella’s hydrocephalus is still a concern and is monitored by our neurosurgeon every 2 months. Her circumference is now 53cm. We don’t know if she has been compromised mentally, it is a wait and see type of thing. So far she seems to be on target in that department. Physically she is delayed but progress is being made daily.

The medical care Ella has received has been phenomenal. Everyone is on the ball. Our strength has come through faith and prayer, church community, family and friends. We have been showered with encouragement, blessings and support in every way. So humbling, so appreciated. Ella is a truly special little girl and we are thankful every day that she is with us.

Update June 2005 – Ella is now 3 years old and doing wonderfully. The clot where the AVM is still slowly shrinking, she still has hydrocephalus but it is stable and being monitored by way of MRI’s every 6 months. Physically, she still has very low muscle tone and has just started walking using a walker. Mentally, she is as smart as a whip and plays me for a fool all the time. She seems to have such depth to her soul and a sensitive heart. 2 1/2 years ago I tried not to let myself think of Ella being 3 but here this amazing kid is. We are so thankful for her.

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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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