The joy of adopting a child with spina bifida from China

April 29, 2012   Opinion

Faces Archive | Source

Spina Bifida Association | Original Link

Nicole Gower and her husband Scott found themselves wanting to still add to their family after they suffered a miscarriage in 2005. Adoption seemed a viable option, and the couple began to pursue the process for a child in late 2006. In 2008 and again in 2010, they opened their Florida home each time to a beautiful girl from China. The process of adopting Katelyn, now 6, and Courtney, now 4, proved to be a patient undertaking but well worth it.

Below is an interview with Nicole Gower.

How did the adoption process go from applying for a healthy child to finally receiving one with special needs?
At first we pursued a normal adoption from China, but as we went through the process we saw an opportunity to give a loving home to a special needs child. It just felt right. Our agency, Chinese Children Adoption International (CCAI), processes both types of adoptions - the healthy child and what they refer to as the waiting child (special needs).

How long was the process for you?
A lot of paperwork began in late 2006 for Katelyn, and we brought her home in June 2008. The love for her was so overwhelming that we decided to adopt another again. From the day we saw Courtney we were in love. It took nine months to bring her home so every situation is different.

Are they biological sisters?
No, but in our home we are one family.

How did your biological children feel about the adoption?
My older son Andrew (now age 10) was so excited. Jacob (now age 7) was much younger and just kind of went with it. Andrew wanted to help Katelyn with her walking. Now all of them fight and play like siblings do. It’s really wonderful.

What is it like to parent a child with Spina Bifida?
Parenting a child with Spina Bifida is no different than parenting any other child. Yes, they may have some physical limitations, but they are children! They have the same desire to be loved and cuddled and read to. They like to play and laugh and just enjoy life! Every child deserves a loving family and children who have been identified as “special needs” are beautiful children just waiting to be loved.

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What are the more common forms of Spina Bifida seen in children adopted from China?
Spina Bifida has several different forms. Some of the more common ones seen in children that have been adopted from China are meningocele, myelomeningocele (meningomyelocele) and lipomyelomeningocele. Meningocele is the least severe form. Often times, there is little to no nerve damage and the child may only have minor disabilities. Myelomeningocele (meningomyelocele) is the most severe form where nerves are definitely affected, often resulting in more disabilities. Children with myelomeningocele also have a greater chance of developing hydrocephalus. Lipomyelomeningocele is an accumulation of fatty tissue that extends down into the spinal column. The spinal cord may become tethered (attached) and is stretched like a rubber band. Tethering can cause nerve damage and must be monitored closely since it could recur despite surgery.

It is important to note that it may be difficult to determine the form of Spina Bifida that the child has based on the medical file received. Often times, different terminology is used throughout the file. It may say meningocele in one part and myelomeningocele in another part. Sometimes things can get lost in translation as well due to the similarities of the Chinese characters for the different forms of Spina Bifida.

Could you tell what your child's mobility would be based on the medical file?
Although nothing is set in stone (as every child presents differently), the lower the lesion the better, as fewer nerves are usually involved. Families will often receive information about their child that includes some medical information and some developmental information. It will tell you what your child was able to do at the time of the assessment but bear in mind, the assessments are often done months or years in the past.

I encourage prospective families to seek additional medical advice from medical professionals specializing in International Adoption and Spina Bifida. Every single case of Spina Bifida is different and every child’s preadoption history is different. Be honest about what you and your family are able to deal with emotionally, physically, and financially. Contact your insurance provider to determine what will be covered and what your deductibles and out-of-pocket maximums are. If possible, contact other families that have already adopted a child from China with Spina Bifida. These families have experience in living with a child with Spina Bifida and can give lots of practical advice on how to handle daily life.

Was bowel and bladder continence an issue?
The bladder and bowel incontinence issue was scary as we are an active family. We came to find that people that are incontinent can still lead active lives. Many children with Spina Bifida catheterize their bladders 3-4 times a day. This is not a painful procedure for the child. It's just something that takes getting used to.

I would also suggest being patient before, during, and after. There are a lot of good agencies out there. I found CCAI to work for us.