A Special Baby: Ellen’s Story

Ellen had four babies at Whitehorse General Hospital. Her births were always fast and she

liked the support that she got at the hospital. In her fifth pregnancy her baby was diagnosed with spina bifida at the 20 week ultrasound. Spina bifida is a birth defect where there is incomplete closing of the backbone and membranes around the spinal cord.

“The next few months were just terrible,” Ellen says. “I had a lot of people giving me wrong information. I had so many ultrasounds and tests done on me and my baby. I was told my baby would have brain damage and I was told over and over by the maternal fetal medicine doctors that I should probably terminate this pregnancy. I knew from the start that this was not something I would do, but it was very scary and intimidating and I felt terrible.

“Finally, two months before my due date a genetic counselor set me up to see someone at the spina bifida clinic at B.C. Children’s (Hospital) and that was the best thing that could have happened.”

The clinic was very supportive and provided more accurate information. Ellen met with the neurosurgeon who would later perform Sophie’s surgeries and she found him to be consistent and reassuring right from the start. 

This gave her so much hope along with seeing the pictures they showed her of children who were living with spina bifida. 

Ellen found out that while spina bifida is something that affects someone all their life, people with spina bifida live normal lives and they usually don’t have brain damage. It is a misconception that spina bifida is a mental disability, as long as it is treated properly. She also found a spina bifida forum online that helped her a lot: http://community.babycenter.com/groups/a3825/spina_bifida_kids

Still, the pregnancy was a really hard time, the uncertainty of what to expect was very difficult to deal with.

Ellen’s older children were eight, six, four and 18 months when the whole family, including her parents, went to Vancouver for the birth. They stayed in subsidized housing for long term hospital stays and did fun things with the kids while they waited.

The birth was fast and easy, as usual for Ellen, and baby Sophie was born on Oct. 18, 2011.

“I was very relieved that she just looked like a normal baby!” Ellen says. “I was scared to meet her, because of all the things I had been told before, but once you meet your child it is all worth it.”

Sophie was wrapped in something that looked like plastic wrap to protect the hole in her back and whisked was away immediately to the Neonatal Intensive Care Unit. She had her first surgery 18 hours after she was born to close the hole in her back, which went well, but it took three days until Ellen could actually hold her.

She pumped milk and finger fed Sophie and then a second surgery was needed at nine days where they put a shunt in her head to treat hydrocephalus, which affects 80 per cent of people born with spina bifida.

They ended up having to stay in hospital longer because of an infection, but finally on Nov.19, Sophie came home.

Ellen found that having Sophie taught her that being a strong advocate for yourself is very important. Especially when conflicting information is given, taking time to find out what this might mean, and finding support, is vital.

“I was worried when I was pregnant that Sophie would have a hard time fitting into our very active family, but everything has worked out really well,” Ellen says. “There are some specific medical needs that Sophie has, we go to Vancouver every six months to the spinal cord clinic and I feel very well supported by them.

“I try to not worry about what will happen, but just take it one step at a time. We really celebrated the milestones of when she walked and this summer when she rode a bike for the first time. Sophie is a part of our family just like the other children and she just happens to have spina bifida. It does not define her, but rather is something that comes along with her.

“Of all my children she is definitely the most stubborn and independent and while that can sometimes be hard to deal with I feel that she is well equipped for life. I am glad I had four children before her, because we just treat her the same as the others and we all expect the same things from her as from the other children.”

Sophie is a very bright five-year-old with a sunshine smile and an amazing imagination. She aspires to become a doctor one day. Her use of vocabulary is astonishing and I feel honoured to have been served make-believe tea and treats by her!

October is National Spina Bifida Awareness month. Check out SpinaBifidaAssociation.org for more information.

What’s your story? If you are interested in sharing your Yukon birth story please contact me at [email protected]

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