Monday, January 25, 2010
I was nine months pregnant and loved every minute of it. I went in for a routine test to make sure that my baby was okay because he really wasn’t moving around a lot.
After it was all over the technician told me that my baby had spina bifida. I couldn’t believe it! I had taken folic acid for at least 6 months before I became pregnant to prevent having a baby with spina bifida. My husband and I were devastated and to make it all worse, my doctor was too busy to talk to us.
We couldn't wait. We called my sister-in-law who was a nurse at Sick Kids. “Saint Sheila” got us into the high risk pregnancy unit at Mount Sinai Hospital right away. The team explained the worst case scenario – my child would never walk unassisted, have no control of his bowels or bladder, have learning disabilities and suffer from hydrocephalus.
Two weeks later at 3:00 pm on September 11, 2001, Jacob Rayment was born. They took him away immediately and I didn’t get to see him until he was 2 hours old. The doctors said they would perform surgery the next morning to remove the lump on his back. Then they whisked him away again for further tests. When I finally got to see him that night, he was attached to all sorts of machines, but I was at last able to hold him. I was only allowed to spend a few minutes with him and that is when I first felt that overwhelming feeling of love that I had always heard about when you become a mother.
I didn’t get any sleep that night as I was worrying about this small helpless infant about to go through major surgery. The next morning, after anxiously waiting in the recovery room for 4 hours, his neurosurgeon came out and explained that Jake would be able to walk without much assistance and probably would not have hydrocephalus. However, he would not be able to go to the bathroom normally and would have learning disabilities. It was still scary, but so much better than we were originally told.
The next week my husband and I spent 24 hours a day at Sick Kids learning how to cope with our special needs child. We had to learn how to change his dressing and how to catheterize this tiny infant. We got by on very little sleep on the small couch in Jake’s room. Finally on day 5 Jake was taken off of the equipment and for the first time we were able to really hold him. Jake was discharged 7 days after he was born and that is when the real fun began.
The first few days home were really difficult – as every new parent knows. On top of no sleep we worried about how we going to manage with this new creature. We had to catheterize Jake every 2 hours, chart his fluid intake and output, change his dressing, and go to many, many doctors’ appointments. All this and I was now freefalling into postpartum depression. It was insane! Most of it is still a total blur.
Thankfully, we were given information about the Spina Bifida and Hydrocephalus Association of Ontario (SB&H). They have made all the difference to us – they were a wonderful source of understanding, kindness, support and education. Because of the exceptional staff at SB&H, for the first time we knew we weren't alone and that maybe, just maybe, Jake was going to have a full and rewarding life.
SB&H helped us understand Jake’s condition, what we might expect in the future and how we could help Jake become the very best he can be. They gave us a crash course about the complications of spina bifida. Later on we received information for Jake’s teachers that gave them strategies for teaching children with the learning disabilities that come with the condition. The Association also provided books depicting children with wheelchairs, crutches or braces that are just like other kids. It was good for Jake to see spina bifida portrayed so honestly and positively. You won’t find these books in most libraries but SB&H made them available.
Being a parent of a child with spina bifida comes with many challenges. I worry every night that someone will make him feel bad because of his disability and I will not be able to protect him. I honestly would give up my life to prevent this from ever happening to him. I love him with all my heart!!!
Jacob is an incredibly funny and resourceful child. I am grateful every day for his birth. He loves karate and is becoming extremely confident at downhill skiing. I am so proud of how well he is doing. He is also a fantastic brother to his baby brother, Jesse.
I’m not sure what the future holds and the struggles that are ahead for his education, bowel/bladder issues, mobility and so much more. But, I do know that SB&H will always be there for us. That gives us hope and there is nothing more important than that.
The Association needs the help of donors like you to continue their good work. I urge you to support SB&H with your gift $40, $60, $80, $100, or whatever you can afford at this time. Consider joining the Monthly Giving Club. Monthly giving is easy and convenient for you and it provides the Association with stable, predictable funds. It also reduces administrative costs. For just $10 a month you can provide wonderful books for children like Jake that help them understand their condition.
Please give generously. Your thoughtful gift will ensure that SB&H will be there when it matters most. Your donation now will enable them to continue delivering support, guidance and information to everyone in the province living with spina bifida and/or hydrocephalus. Since they do not receive government funding, they depend upon caring friends such as you to touch countless lives through your donations.
P.S.Please help us make dreams come true for so many
Mothers like Jennifer. They wish for their child to be happy and healthy.
That’s what it’s all about. Your gift will help.
Posted by mountie9 at 8:06 AM