Hydrocephalus/spina Bifida

Hi L., I don't have a child with spina bifida or hydrocephalus. However I've worked with lots of kids with special needs over the years (30). All the kids range in their abilities and disabilities. I do think you'd have to meet the little girl to know what her functioning level is now, to recognize what her difficulties are and to realistically see if working together would make you a stronger couple. I saw a couple of three year olds last year who were such fragile new borns. Now they are doing well, although a little behind in speech and a bit more clingy to their parents than is typical. They also do continue to have some bladder and bowel difficulties- potty training is more difficult because of loss of sensation. As far as the hydrocephalus- is it controlled with the shunt and medication? If she has significant retardation, you need to know that.

L.:

I work at Shriners Hosptials for Children - Los Angeles. There is lots of information on the web about Spina Bifida (like the Spina Bifida Association of America - www.sbaa.org).

Here is a link to some information on the Shriners Hospitals webiste:

http://www.shrinershq.org/Hospitals/Los_Angeles/condition...

Shriners Hospitals for Children treats children under the age of 18 with burn scars, orthopedic conditions, cleft lip and palate and limb deficiencies at no cost to the children and their families. We are a system of 22 hospitals throughout North America.

Just let me know if you would like me to send you an information packet about the hospital.

Good luck!

E. (full time mother of 2 children ages 5 & 2)

Dear L.,
I was an occupational therapist and then a special educational teacher. I am sure you have "googled" spina bifida and hydrocephalus.

Since the little girl can stand alone and walk, the damage to the spinal cord is minimal because it was low on the back. I worked with a student from 3rd grade thru high school who could walk, but the stairs during "rush" time in high school required her to use the elevator. She attended regular classes in grade and high school. She was incontinent, however, and needed to have a catheter to drain the urine. She was able to take care of this independently by about 4th or 5th grade. Before this, the school nurse did it. We did have problems with her knowing when she was going to have a bowel movement and she needed permission to just walk out of classes when she felt it was coming (without questioning or asking). Continence will depend on how low the spinal injury is.

The hydrocephalus and how it will effect her prognosis depends on when they caught it and put in the shunt. If done early, it will just mean the head is slightly larger because the skull was expanded to make room for the brain. Now that the shunt is in place the main thing would be to watch and make sure it doesn't block. Doctors can explain this to you and sometimes it needs to be replaced. If the shunt was not put in right away and the skull had begin to harden and the joints fuse, then there could be damage to the brain because the spinal fluid that was backing up would have put pressure on the brain. In other words, she could have minimal brain damage and thus learning difficulties. I have worked with a number of children who are in wheelchairs because of higher spina bifida lesions, but have normal intelligence. It is hard to tell without seeing how she is doing with development in other than gross motor areas. Is she beginning to talk? Is she interested in toys and her surroundings? Is she socializing? Is her fine hand coordination developing? If she is developing normally in these areas she should be fine. I do not know what country she is from, but sometimes in orphanages the children are kept in cribs and they will be lagging in these areas even without spina bifida and hydrocephalus. Then she may need occupational therapy to assist her in catching up in these areas.

As far as other therapy, she made need physical therapy if she has problems with walking or to strengthen her lower extremities. If she has problems with speech, she will need a speech therapist.

Basically, if you adopt her, you will need to have her have a complete evaluation which assesses her level of development in each are and then go from there. It may be a difficult journey, but I am sure that you will love her and she would be a very precious addition to your family. Special needs children can be a stress on a family, especially between the parents, so you both need to feel that you want to do this together and support each other in it.It is a commitment, but if your family is strong and desires to try it, may God bless your adoption of this precious child.
H.

Children, however they come to you, do not arrive with a guarantee. Unless you are prepared to accept this child unconditionally, do not consider this adoption. Her health issues are probably being minimized... however, neither condition you mentioned is necessarily a lifelong handicap. If you decide to adopt this sweet little girl, be prepared for the worst, and you may be pleasantly surprised.

as a child therapist who has worked with children who have special nedds for several years as well as a child with spina bifida ..........please look for a developemental pedatrician and talk with them about what you are facing. Also Call Westside Regional Center and ask what services they offer for your child. This is a lifetime commitment and at times can be extremely difficult. Does this child have mental delays? Also a problem. Let me know how it works out. GOOD LUCK!!

I have no experience with the condition(s), but adopted a baby boy last year and it is the most wonderful experience of my life.

Wishing you the same happiness. God bless you!

I have no experience with any of this, but I wanted to say God bless you and your husband for considering giving this beautiful child a chance to live with a family that loves her and WANTS her!!! I am sure that whatever she brings to your home, happiness, joy, love and laughter will outweigh any challenges that her ailments might cause.

Best wishes to you and many blessings for your family,
W. :)

i was born with hydrocephalus. If you'd like to contact me offlist please email me
____@____.com

A great book to read is One Tattered Angel: A Touching True Story of the Power of Love by Blaine M. Yorgason if you like stories about how incredible special needs children are.

I have a 4 year old son with hydrocephalus and an arachnoid cyst. He has severe developmental delays. He gets occupational therapy, physical therapy, speech therapy, social therapy, and we are in the process of getting a behaviorist. We also get respite care through regional center. We even have Boozle the Hydro Bear who is a stuffed animal that has a shunt so that my son has a better idea of his disability. Please feel free to contact me anytime.
M.
____@____.com

I am an adoptive mom and sister to adoptees. I agree with Ami that overseas agencies tend to withhold or minimize "the whole story." Make sure that you understand going in that her problems may be worse than what you have been told. Do your research about her issues, just like you are doing by asking for people who have had experience with them.

Shunts are tough. They get infected, and they can pop out, and they need to be replaced a couple times due to growth. My son had hydrocephalus and he had a head tube, and THANKFULLY a permanent shunt was not needed. But, you know what, if he had needed a shunt then we would of just lived with it. What can you do? You do the best for the kids you have.

I do not know if you have adopted yet, but, kuddos to you for considering a child that comes with challenges. I do know you will have YEARS of therapy, the physical, occupational kind. And, I do not know what else. Find out, because you dont want to to be given a child that you think of as SUCH a burdin. There will be quite alot involved to care for the child. Do not let any one make you feel guilty if you don't adopt. Because with a healthy child life isn't all sunshine and flowers, a child with needs can be even harder.

Hi L.!

My son has Spina Bifida too... although he is my natural son, not adopted. Nathaniel just turned 8 last week and we have been down many roads with him. Adopting a child with these needs would not be easy, but it could be a great blessing for both your family and the little girl. I have much experience and would love to chat some if you would like.

I do have to say that we are blessed to live in a country that has very advanced medical technology and can offer children with special needs a life greater than many other countries. I am daily reminded of this in my son's life! You mentioned hydro and walking, but what about bladder/bowel issues?? This to me is one of the hardest daily things with a child with Spina Bifida....

Anyways, feel free to message me or email me at ____@____.com to talk anytime!

PS.. I just noticed that you actually live pretty close to us, so if you would like to get together and meet my son let me know :) it might give you a clearer picture of what you might be facing....

I don't have any experience with these health issues but I do want to give one piece of advice.
My daughter has motor delays and has been in special classes since 18mo. We have met several families in her classes who adopted their children from overseas. In all but one case, the families were told the child was perfectly healthy. In actuality these kids had several physical issues from developmental delays to severe torticolis to cerebral palsy.
I know this little girl will be so blessed to become part of your family. I would just encourage you to really push the agency for all info possible so you know exactly what your new daughter will need.

L.,

My son has hydrocephalus. He is currently in physical therapy to help do all the things he can't do yet.Since he started physical therapy we have seen a dramatic change, he can do so many more things!!!! He also has a shunt. He is a happy little boy who loves life!!! He is almost 21 months and he can't walk unassisted yet but he is getting there. If you have any other questions feel free to email me!!

S.

Hi L.,

You are an inspiration! I do not have a child with these special needs, but I thought I would send a website for a popular children's show. It's called "Signing Time" and the woman who does it, Rachel Coleman, has two daughters. Leah was born deaf and then Lucy was born with spina bifida and cerebral palsy. I went to see her when she was in Los Angeles and their family's story is amazing. Lucy has done far more than the doctor said she would. He said she would never speak, walk, etc. but she now does both and she signs as well, so she is bilingual! You might want to read her story and even contact Rachel on her blog. She is a real mom even though she's famous and I'm sure she'll answer some of your questions.

You can find their story at http://www.signingtime.com/article_info.php?articles_id=2 or go to www.signingtime.org and then to "Our Story."

By the way, I'm not trying to sell any of their products or anything like that. We watch her show on PBS and signed with my son so that's how I know about her. Depending on the severity of the little girl's conditions, signing may be useful for you if the adoption goes through too. All children are precious gifts. I wish you and your family all the best.

M.