Adoption and Spina Bifida Occulta

Hugh Jackes · 11-14-2006, 08:07 PM

We are on track to make our first of two trips to Russia sometime around December 10. That doesn’t necessarily mean that that is when we will travel, but that is our goal and, as I said, we are on track. We have been working toward an adoption of a pretty 8-year-old girl in generally good health.

My adoption agent surprised us out of the blue last week by asking if we would have an interest in adopting a second child; a very cute 5-year old boy. He is not related to the girl who was referred to us, but is from the same region (if not the same orphanage).

He is reported to have Spina Bifida Occulta, the least serious form of Spina Bifida. From my research on-line, I see that 5% to 10% of babies may be born with Spina Bifida Occulta, and most of these never know they have it unless they have a back X-ray or MRI. If you or one or more of your children have a birthmark, hairy patch, or dimple right over the spine, you or they may have this condition. Spina Bifida is an improper development of one or more vertebras in the spine. As I understand it, in the more serious versions, the spinal cord grows outside of the vertebra and perhaps even outside of the skin. These people usually have a raised lump over their spine. For most people with the less serious, Occulta version, there will few or no consequences whatsoever. For some small percentage of people, there can be a weakening of lower limbs, malformed feet, or bladder and/or incontinence problems. These may occur during their adolescent grow spurt, when the spine can snag or stretch as the body grows (tethering seems to be the official medical term). A relatively successful surgery exists that can relieve most of those problems for teens who do develop tethering. If bladder and/or incontinence do occur, though, it is rare that those conditions are relieved by the surgery.

The report from the orphanage is that this boy “walks and moves normally, but he is restricted in how active he can be” Therefore the Russian doctor thinks he might need the surgery to make sure everything goes ok while he is growing.

You may read about this condition in more detail at http://www.asbah.org/Downloads/InfSheet_8-SBO.pdf#search='spina%20bifida%20occulta'.

I am strongly considering bringing this boy home too. My question to you fine folks, do any of you have experience with Spina Bifida Occulta? Can you tell me your experiences?

Sean Bryan · 11-19-2006, 03:24 PM

Hugh,

I was a genetic counselor for seven years, but I've been out of the field for about two years now so my knowledge is kinda rusty.

However, what you said sounded about right to me. But just to clarify, it is important to understand that the serious "spina bifida" is part of a more general condition called a "neural tube defect" which also includes the fatal "anencephaly". One of the reasons that women are supposed to take extra folic acid during pregnancy now is that it has been shown to decrease the risk of a neural tube defect, which includes "spina bifida" but is not at all related to "spina bifida occulta".

Spina bifida occulta is not a neural tube defect, but a variation in the development of the vertebrae. As you said, most people with it never know they have it unless the spine is looked at for some other unrelated reason. But I am a bit uncertain about where the spina bifida occulta with subtle outward signs and some potential for complications fits in. The terminology that is used for these conditions is unfortunately very confusing.

As I said, my knowledge base is rusty, but I believe that the spina bifida occulta that is just the minor variation of a vertebrae and is not accompanied by any subtle outward sign (birthmark/dimple/patch of hair) and is just completely undetectable other than by looking with an X-ray is basically insignificant for that person (and their offspring).

The type that is somewhat more extensive which may lead to some complications (that can typically be addressed) is the one that has the subtle outward signs. I believe. Though the problems that can be associated with this are not nearly as significant as those seen in the open neural tube defect "spina bifida".

Please don't take any of this as gospel, because I've been out of the field for a while and the unfortunate terminology for these conditions (the serious neural tube defect spina bifida, spina bifida occulta that is insignificant, and spina bifida occulta that can have some complications) makes it very confusing to know what you are really dealing with when you are just given the term "spina bifida occulta".

What I would strongly recommend is to try to schedule an appointment with a geneticist (M.D. physician specializing in genetics) or a genetic counselor (a healthcare professional with an M.S. in human genetics -that often works along with a geneticist- who's profession is based on sorting out and explaining these issues for people).

He/She/They would try to clarify this issue for you and address your concerns. Hopefully they will be able to determine exactly what this is (and therefore what should be expected) based on whatever information you have been told and can provide. They may want you to try to get additional information on him in order to clarify his diagnosis of "spina bifida occulta".

I think that would be the best thing to do if you have concerns about this issue and this may be a factor in whether or not you decide to adopt this boy. It is completely understandable that the potential for uncertain health complications and expensive surgeries would be a factor in deciding whether or not to adopt a child. However, seeing as how it may very well be that what he has is completely insignificant, but the term used for the diagnosis is unfortunately associated with other more serious conditions, it would be a shame if a shortcoming of the medical community led to him not being adopted by someone who otherwise would have. I feel it would be best for both you and this boy that you have this clarified as best as possible by a professional who deals with this kind of stuff so that whatever decision you make, you know it is based on the best information you could have based it on.

The internet is a great place to learn about lots of stuff, but you do get bad information along with the good and sometimes it is best to supplement that with a discussion with someone who is an expert once you have given yourself that "base knowledge".

You don't typically see listings for genetic counselors in the yellow pages. Probably not for M.D. geneticists either. But most large hospitals have a geneticist or know where to refer people for genetic counseling. You could ask your family physician for a referral. An OB/Gyn is very likely to be able to refer you in the right direction because they have to deal with genetic issues all the time and often refer their patients for genetic counseling. If you are near a large city it shouldn't be too difficult to find someone. It could be more difficult if you are are not. Where are you located? Maybe I'd know the place to call.

Chris · 11-19-2006, 03:38 PM

First, Hugh, I have all the respect in the world for you helping to make things better for these kids. It's very heartwarming.

Second, I'm very familiar with this condition, and the form which this boy suffers is the most mild form. That isn't to say that there won't be difficulty - or that the diagnosis you've been given is correct.

Children who have some complications not normally considered as direct Spina Bifida Occulta are often seen as having occult spinal dysraphism (OSD). I would advise you check with a doctor about the nature of this child's condition.

For many children though with this condition, the big issues are that they will have difficulty potty training, because of issues with the way their bladder functions and receives signals (so many children with Spina Bifida Occulta have great difficulty with stopping wetting the bed - not their fault, their body just gets the wrong signal) and controlling keeping it in between bathroom breaks (dribbling).

Some of the surgeries related are pretty minor if you go that route; some children with Spina Bifida Occulta do the surgery (ies) depending on the severity; some help controll more minor cases with dietary controls and treatment.

Whatever you decide to do, I wish you all the good luck in the world as you think about an undertaking for a child who needs love far more then he needs surgery and treatment. Children of any genetic condition who are loved and care for fare INFINITELY INFINITELY better then those who do not.

(having a family member with Osteogenisis Imperfecta, I can tell you that for a FACT!)

Hugh Jackes · 11-20-2006, 08:27 PM

I very much appreciate the intel. Thank you.

Jay H · 11-21-2006, 07:16 AM

Quote:

Whatever you decide to do, I wish you all the good luck in the world as you think about an undertaking for a child who needs love far more then he needs surgery and treatment. Children of any genetic condition who are loved and care for fare INFINITELY INFINITELY better then those who do not.

I have nothing to add to this but I too, wish Hugh great success...

Jay

**HTF Ads**

Janna S · 11-21-2006, 01:53 PM

You will also want to check into the possibility that the adoption of a special needs child may make you eligible for special adoption assistance and other long-term benefits through your state child welfare department. These subsidies are available through the federal government, and are intended to encourage foster care and adoption of children with documented special needs. In some cases these subsidies are available for children who are adopted from other countries. I don't have any more technical information about this because it has been several years since I was involved with this program (in a former job). But it's worth looking into.

It is wonderful that there are people who are willing to take on such challenges. Good luck to you and to the children.

Randy Tennison · 11-21-2006, 02:00 PM

Hugh,

First, congrats. My wife and I adopted our son from Russia last year, when he was 13 months, and he's the joy of our life. What region are you adopting from? Be ready for the ride of your life. It was amazing.

Next, and this is big, Russia medical terminology and American terminology are not the same. If your agency hasn't warned you already, you will hear some truly terrifying "diagnosis" of any child you wish to adopt. Prenatal Encepholopathy is one we heard. We were also told our son has a weak spine. Psychomodal delay of speech. What do these mean? They mean the child has been in an orphanage, and hasn't had one on one care from a parent. We were pre warned that almost every child from an orphanage has those diagnosis'.

Russian medicine is very different. They have many different beliefs on how disease starts, progresses, etc.

Also, they have to justify to the courts why they have been unable to adopt a child domestically, rather than going international. So, they often come up with horrible medical diagnosis' to show that no one there would want the child. Our son's diagnosis was so bad, the court waived the mandatory 10 day wait so we could get him home to a doctor. Guess what, other than a case of scabies, he was fine. There is nothing wrong with this kid. He's full speed all day.

So, I guess my advise is don't take the diagnosis too literal. Evaluate him yourself. See how he moves. What does he do. Send medical information back home to doctors specializing in internation adoption (there are several who do internet consultations). But, don't let the diagnosis alone make your decision.

Congrats again! I always celebrate when another child is given a forever family. Also, if you have any questions, or need any advise, IM me. I can tell you where a wonderful bakery is in Moscow. They had the best pastries!

And, learn these words, Vata Biz Gaza. It's water without bubbles. Otherwise, you get carbonated water. Yuck!

Hugh Jackes · 11-22-2006, 08:48 AM

Randy, we have spoken before on this board. My first country of interest was the Ukraine (because only one trip is required), but just as I finished up my home study, they put a moratorium on international adoptions while they rewrite their laws. No one can predict how long their doors will be closed and no one can predict what new snags will develop in the new process. So we shifted to Russia. Both children are in the Yaroslavl region, about 200 miles NE of Moscow.

Our agent advised us about how medical conditions are ginned up to justify allowing the child to be adopted out of country. The first child that we were referred to was described as "in generally good health". The second , the surprise, is the one who is diagnosed as having SBO.

Our agent has also advised us that we need to bring for our second trip one or more letters that justify why we need to get ourselves or the child(ren?) back to the US in a hurry. This is the unspoken prompt to the judge to waive the 10-day waiting period. This can be pressing projects at work for the parents or medical exams or procedures scheduled for the child(ren). If we bring home the boy, it should be easy to justify the need to get him to our family pediatrician as soon as possible.

I'll check with you before our second trip about that bakery. We are advised that on the first trip we will be met at the airport and whisked directly to Yaroslavl, either by train or in our agent's car. Then straight back to the airport on the way home. No time for sightseeing or bakery visits on the first trip.

I appreciate your insight.