Since embarking on this journey, I have felt a new purpose in what I'm supposed to do. I feel the need to advocate for kiddos with SB. I feel the need to educate others so they aren't scared about this diagnosis. I've spoken with many families over the past couple of years... families that are considering adopting a child with SB. There's so much to learn, and it's often difficult to find the right answers (especially in regards to adopting a SB kiddo from China). I want to be positive but realistic when talking with these families. In order to do this, I've compiled some of the most frequent questions (and my answers) I've been asked... if you are interested in learning more, continue reading. If you are a family that may be considering this, please know that I am NOT a medical professional. I'm simply a BTDT mom! :)
What is Spina Bifida?
Spina Bifida is a neural tube defect that literally means “split spine.” It occurs very early in the mother’s pregnancy. Basically the spinal column does not close all the way. Folic acid, heredity and environmental factors can play a role in this occurring.
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.
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.
Can Spina Bifida be fixed? What other needs are commonly seen with Spina Bifida?
Spina Bifida can be treated, but it cannot be cured. Once nerve damage is done, there is little you can do to reverse it. A good analogy is that it’s like diabetes. It’s a chronic condition that cannot be fixed, but it can be managed. Children with Spina Bifida should be seen by specialists to help monitor the child and to prevent further nerve damage due to spinal cord tethering or other related issues. Some children also experience secondary conditions associated with Spina Bifida. Those conditions include (but are not limited to) club feet, scoliosis, hydrocephalus, Chiari malformation, syrinx (fluid-filled cysts in spinal column), neurogenic bowel and/or bladder and latex sensitivities. Children will often see specialists in the following areas: neurosurgery, orthopedics, orthotics, urology, physical and occupational therapy, pulmonology and nephrology. Finding a Spina Bifida Clinic near you can help tremendously in getting your child the support and care they need. Most children will attend a “Clinic” twice a year until they are about five or six years old. At that point, as long as things are going well, visits may be reduced to once a year.
Spina Bifida can be treated, but it cannot be cured. Once nerve damage is done, there is little you can do to reverse it. A good analogy is that it’s like diabetes. It’s a chronic condition that cannot be fixed, but it can be managed. Children with Spina Bifida should be seen by specialists to help monitor the child and to prevent further nerve damage due to spinal cord tethering or other related issues. Some children also experience secondary conditions associated with Spina Bifida. Those conditions include (but are not limited to) club feet, scoliosis, hydrocephalus, Chiari malformation, syrinx (fluid-filled cysts in spinal column), neurogenic bowel and/or bladder and latex sensitivities. Children will often see specialists in the following areas: neurosurgery, orthopedics, orthotics, urology, physical and occupational therapy, pulmonology and nephrology. Finding a Spina Bifida Clinic near you can help tremendously in getting your child the support and care they need. Most children will attend a “Clinic” twice a year until they are about five or six years old. At that point, as long as things are going well, visits may be reduced to once a year.
How will SB affect my child’s quality of life, and where can we go if we need support?
Children with SB can lead nearly normal and full lives. Although they may have some physical limitations that need to be addressed, they tend to be very determined due to what they have already had to overcome in an orphanage or foster care setting. It is important to help your child become independent and to treat him/her as normally as possible. These children are often viewed as disabled, but they are just differently-abled! According to the Spina Bifida Association’s website, most children do well in school, and many play in sports. Because of today’s medicine, about 90 percent of babies born in the USA with Spina Bifida now live to be adults, about 80 percent have normal intelligence and about 75 percent play sports and do other fun activities.
Children with SB can lead nearly normal and full lives. Although they may have some physical limitations that need to be addressed, they tend to be very determined due to what they have already had to overcome in an orphanage or foster care setting. It is important to help your child become independent and to treat him/her as normally as possible. These children are often viewed as disabled, but they are just differently-abled! According to the Spina Bifida Association’s website, most children do well in school, and many play in sports. Because of today’s medicine, about 90 percent of babies born in the USA with Spina Bifida now live to be adults, about 80 percent have normal intelligence and about 75 percent play sports and do other fun activities.
Your local Spina Bifida Clinic and the Spina Bifida Association can help connect you with other families to give you and your child (and the rest of the family) support as you face possible medical and social challenges associated with Spina Bifida. Another great resource is the China Adoption Spina Bifida Yahoo group.
I've also found a great group of BTDT moms (most are bio families) that have lots of additional experience. http://community.babycenter.com/groups/a3825/spina_bifida_kids?
The bladder and bowel incontinence issue is scary as we are an active family. How can we manage this? Are there any surgeries that can help with the incontinence?
People that are incontinent can still lead active lives. Many children with SB catheterize their bladders 3-4 times a day. Keep in mind that this type of cathing does not mean the catheter stays in. It's called Clean Intermittent Catheterization (CIC). You simply insert the catheter, drain the bladder and remove the catheter. This is not a painful procedure for the child, it’s just something to get used to. For some children, this does not keep them completely "dry.” In this case, medications may be prescribed. SB children may also have less sensation to "poop” and can easily become constipated. Children can be put on a bowel program to help manage constipation. Some children simply get into the routine of “bearing down” or “pushing” at certain times of the day. Conditioning their bodies to do this can really help. Other times a combination of medicines (such as Miralax), suppositories or enemas can do the trick to help flush out the system on a regular basis.
Yes, there is a bladder surgery that is currently in clinical trials. It is referred to as nerve re-routing or the Xiao procedure. This and other research efforts are underway in hopes of addressing incontinence for all SB children. Until then, bowel and Bladder programs can provide children with safe and effective alternatives.
What is is 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!
If you look at the file of a slightly older SB child, and the child is running, jumping and climbing like any other child that age, does that say this child will always be that mobile or can things get worse?
Unfortunately, some pediatricians have told parents that if the child is walking now everything will be fine, but that's just not always the case. Mobility can decrease due to tethering issues. Obesity, the level of the defect as well as changes in the center of gravity due to growth can make it more difficult for the person to walk. Staying on top of things definitely helps, though!!! Also, in the case of very young children, it is important to note that just because they can move their legs, it does not mean they will be able to bear weight on their legs and walk unassisted.
Unfortunately, some pediatricians have told parents that if the child is walking now everything will be fine, but that's just not always the case. Mobility can decrease due to tethering issues. Obesity, the level of the defect as well as changes in the center of gravity due to growth can make it more difficult for the person to walk. Staying on top of things definitely helps, though!!! Also, in the case of very young children, it is important to note that just because they can move their legs, it does not mean they will be able to bear weight on their legs and walk unassisted.
How can I tell what my child’s mobility will be based on the medical file?
Although nothing is set in stone (as every children presents differently), the lower the lesion the better, as fewer nerves are usually involved. Here are a couple of charts that might help in explaining this. Keep in mind that the child may have a different functional level than their actual lesion level.
You are encouraged to seek additional medical advice from medical professionals specializing in Spina Bifida. Every single case of Spina Bifida 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.
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