As preluded in the previous post, I recently had a chance to visit Washington DC and subsequently New York. It wasn’t a trip that I had been planning, especially not to go by myself. At the beginning of January, Zach and I had the opportunity to participate in a Spina Bifida quality of life study. They took Zach into a room to test him on different things and had me go into another room to fill out and answer what seemed like an endless amount of questions. In all, the process took about 2 1/2 hours. At the beginning of the interview, I told the person that I didn’t know if I got to put my two cents in or not, but that I wanted to say that I was really excited about the study. I told him that I felt there is a huge lack of this information in the medical community, especially among the diagnosing doctors. Parents are often told that their child will have a poor quality of life and are often encouraged to terminate the pregnancy. It feels like they are often giving information based on what they learned a long time ago and don’t seem to keep up to date with the constantly changing medical advances. I told him that just because Zach can’t walk doesn’t mean he has a poor quality of life and that, in fact, for me he defines “quality of life.”
He took note of my comments and asked if it would be okay to tell the director of the study and the Utah Birth Defects Network about what I had said. I told him that would be fine and we then proceeded with the interview.
The next morning, he called asking if it would be okay for the director to call me and I said that was fine, but that I needed to get my kindergartener off to school first. I figured she just wanted to talk to me more about what I had said. She called a couple of hours later and of course, I had left my phone upstairs when I went down, so I was out of breath when I answered.
She told me about how the National Birth Defects Prevention Network (NBDPN) wants to start a grassroots effort that consists of joining parents of children with different kinds of birth defects in order to find commonalities and challenges that we all face. They want it to start with an umbrella parent group with plans of expanding and finding common goals that we can all work towards. They want to develop a stronger voice because even though there are a lot of great programs and groups for specific birth defects, a lot of the overall message of how common and important birth defects are gets filtered out and lost among so many groups. They all fill an important role, but there isn’t a strong, united voice showing just how common birth defects are. She explained that one in every thirty three children is born with a birth defect. That includes things like Spina Bifida, heart defects (the most common), Cleft Lip/Cleft Pallet, Fetal Alcohol Syndrome, Down’s Syndrome, Gastroschesis, etc.
This is an example of just Neural Tube Defects, which include Spina Bifida and Anencephaly, taken from a page from the Utah Birth Defect Network website:
- NTDs are serious birth defects of the brain and spine that occur during the first month after conception
- 1 in 1,365 babies in Utah has an NTD.
- NTDs affect 3,000 pregnancies in the United States each year.
- Spina bifida, an NTD, is the most common permanently disabling birth defect.
- 70,000 individuals in the United States have spina bifida.
- More children are affected by spina bifida than muscular dystrophy and cystic fibrosis combined.
- More than half of NTDs are preventable.
- All women of child-bearing age should take (at least) 400 mcg of folic acid every day to reduce the risk of NTDs.
- The average lifetime cost for medical treatment, educational services and lost productivity for one individual with spina bifida is $635,763.
So, if you think of these stats plus those of all other birth defects combined coming out to be 1 in every 33 births, that’s a lot. That actually every 4 1/2 minutes a child is born with a birth defect and one in every five infant deaths is because of a birth defect.
Autism is a very important cause that has a strong voice for awareness, research, funding, etc. It is something that affects families deeply and can be life-changing. Birth defects are life-changing too and there are five times as many babies born with birth defects than there are children with autism. The problem is that funding for very vital aspects such as research and surveillance is not where it needs to be and is even being put in jeopardy while there seems to be an increase in birth defects.
After explaining a little more, she then invited me to participate in that parent umbrella group and to participate in the NBDPN National Conference in Washington DC. They would be having a luncheon/meeting with others involved, including people from the CDC and the March of Dimes as well as the rest of the parents. Later that same day, we as parents would be presenting in one of the break-out sessions for the conference. There would be four other parents, all with a child with a different birth defect, all working to find commonalities in what we, our children and families deal with. The next day, we could also attend a briefing for Congressional Staff on Capitol Hill .
Of course I accepted. I feel that this is a very important cause and that there is a lot that needs to be done to increase awareness about this issue. I have said before that I feel that Zachary came to this earth just the way he was supposed to come, that I love him just as he is and wouldn’t change him. But that doesn’t mean that I won’t do everything in my power to prevent having another child with Spina Bifida as well as help other families to not have to go through these same trials. I feel that we have been given the knowledge and resources to promote change and that it is our responsibility to do so.
