Adoption and Spina Bifida Occulta (1 Viewer)

[Hugh Jackes]

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]

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]

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]

I very much appreciate the intel. Thank you.

 

[Jay H]

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

Jay

 

[Janna S]

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]

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]

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.

 

[Randy Tennison]

Might also get a letter from your pediatrician, stating that they want to examine and treat the child as soon as possible. From my experience, the 10 days isn't always waived for the conveinience of the parents, but more so for the wellbeing of the child. Ours was waived, but now, our region, Astrakhan, no longer waives it.

Also, do you read the adoptionforums? http://forums.adoption.com/russia-adoption/

They have great information, and you might find some people who have been to your region. Also, Yahoo has many Russian adoption groups divided by region.

FYI, we stayed at the Holiday Inn Lesnaya in Moscow. It's new, clean and American friendly, and not as expensive as others (about 180 a night, as opposed to 200+ for the Marriot Tverskaya).

 

[Charles Guajardo]

I'm curious as to why you would not adopt an American child, there seems to be a huge need for adoptive familes here in the states?

 

[Hugh Jackes]

My wife and I did look into adopting an American child over 10 years ago.

What we found out back then was that there really aren’t many (if any?) orphanages in this country, Dickensian or otherwise. Infants are really only available for those who do private adoptions (find a pregnant woman who does not want her child) and contract with her. Typically, you have to pay for some or all of her housing, shelter, medical bills. Insurance doesn’t cover the costs of pregnancy for this woman who is not part of your family. So, it’s very expensive (not that going the international route is inexpensive) and fraught with peril. What if she changes her mind after she delivers the baby? Not a court in the land will side with the wanting-to-be adoptive parents over the birth parent in such a case.

So, most children available for adoption in this country are older children, which is not a bad thing; it is what my wife and I would really like in our geezerhood. But, on the other hand, in most cases the children that are available are older children who have been taken from their parents for reasons of neglect and/or abuse. Not to sound cold, but they are damaged goods, and may have behavioral and sexual issues.

Anyway, as I said previously, my wife and did go through the process of getting in the waiting list for a child through my county’s department of children’s services. We got licensed as foster parents and enrolled in the fost-adopt program. (In fost-adopt, they look for the children that they are pretty sure won’t be reunited with their parents and will therefore be available for adoption at some time.) We maintained that license for 3 years and did not get a child placed in our home. One possible reason is that my wife had some issues in her childhood that may have looked iffy to children’s services. The local social workers were also dedicated to the idea of race matching (a black kid with a black family, Latino with Latino, Asian with Asian, etc.). It never mattered to us, but they thought (no, not thought, that implies consideration, rather they FELT) that a child could only go to a family of the right race (reverse racism?). Quite frankly (and sadly I might add), most of the kids in foster homes around here are minorities, so the wait was longer for us. Anyway, after 3 years of anticipation and heightened hopes, when our foster license came up for renewal again, my wife opted to just let it lapse rather than watch our phone not ring every day.

Almost 3 years ago, my son was killed in a tragic, random accident. After a year and a half, my wife and I decided to fill the hole in our family by adopting. After some research, we found that the availability of white children in the US is still not as widespread as your question would indicate (which is a good thing, most children here have loving homes), and that we still couldn’t easily get a non-white child. We found that children from overseas are more available, more in need, (I’m a bit ashamed to say that this was a consideration) less expensive, and can be in your home much more quickly. (Less expensive than a private adoption anyway, besides, my wife and I are too old for the infant that a private adoption would involve.) The costs are lower even with a couple of trips to Russia factored in. As an example of my statement that children are “more available”, consider that, once our paperwork was complete, our agent presented us with information on five children in the Yaroslavl region that were available for immediate adoption. And then, as I mentioned when I started this thread, after we had selected one of the children, this sixth child, the boy with SBO, was made available to us.

I hope that answers your question.

 

[Randy Tennison]

Very well said.

The only thing I would add is that if you have ever looked into the face of one of those children in a Russian orphanage, and saw the complete lack of life in their eyes, you would never again distinguish between American and International adoption. They are children, and they deserve a chance at life, no matter what geographical territory they live in.

When I look back on the photos I took of my son in that orphanage, and compare them to the happy child I have at home right now, it's truly amazing to think it's the same child.

I only wish I could have taken them all home.

 

[RichP]

Just wanted to say that I wish you all the luck in the world Hugh.

I hope that everything goes well for you!

 

[Hugh Jackes]

Recalling my old thread to report that we are actually going!

It has been a roller-doaster ride to this point. We actually lost our first referral when a local family took her in as a foster child. They haven't adopted her (sadly), but I am certain it is a better environment than an orphanage, and with luck they will grow to love her and give her a permanent, loving home. Since my wife and I had convinced oursleves that we wanted to bring home two, we lost the boy with spina bifida too (there wasn't another "single" that was ready for adoption.

It is amazing how much it hurts to "lose" these children that I never really had.

But, our agent has presented us with two sisters, 11 and 8. From my 15-year-old son's POV, this is better; he won't have to share a bedroom with a 5-year-old boy. The girls are beautiful, and I cannot wait to meet them.

 

[Hugh Jackes]

My wife and I just returned from Ivanovo, Russia, with our new daughters, Hannah and Oksana. They are very warm, loving, bright, positive, and well adjusted. They have lived with us (in a Russian hotel room, in a Moscow apartment, and our home in the States since May 18th. So far, we have had no major issues arise, they love their new brother, and he adores them.

Thank you for all of your encouragement. For a bunch of photos, please visit my webshots site:

http://community.webshots.com/album/...host=community