Monday, March 3, 2008

K's Paralysis an FYI for Adoptive Parents from Asian & African Countries

This post is a long time coming and it's taken me since October when we finally was able to give a name to K's paralysis, to be able to discuss this. Since her diagnoses, even after all the research I had done on International adoption and diseases they may come home with , this was not even on my radar, I decided this hopefully can educate possible adoptive parents who are choosing an Asian country like Vietnam or China because this is a true possibility that it could affect your child. So here our story.....

When I meet K at her orphanage, she was 5 1/2 months old, she was still being kept in the newborn ward, which I found strange, since our travel partner's child who was only 4 months old was in a different room. When they brought K to me, she looked more like a 1 or 2 month old then an almost 6 month old, she didn't even weigh 11 pounds. The first day she was with us, she was running a super high fever. Since the Nannies didn't speak English I had a hard time trying to tell them she has hot. When they finally realized what I was saying they took her temperature and it was 104. Something else that I noticed that day and mentioned to my Mom was "Do you think she had a stroke?" I said this because she didn't move her entire right side, even when she smiled her little right lip didn't raise up like the other side. We visited her that whole week and I soon realized the reason she was being kept behind in the newborn ward was because it wasn't only newborns there, it was also children who were ill, what I didn't know was the children that were in there were considered terminally ill. All I know was she wasn't getting any better, she was still sick. Luckily they gave me custody of her that Friday. We went to the SOS clinic shortly after gaining custody and he gave us 13 different medications to treat her but he just chocked it up to a cold or flu. She continued to be sick the entire time we were in Vietnam but she had gotten better and stopped running those high fevers. And she also started to use her right hand and when she smiled her right side of her lip also lifted up, so I believed it was orphanage delay and that her leg would eventually catch up to the rest of her body.

Once we returned home to the States, K's leg continued to lag behind the other one. It never had the same strength, muscle tone and she always favored it. Her foot also turned inward and I really thought it was a club foot because it was all the classic signs of one. After months of listening to our family doctor say that her leg if just orphanage delayed, we took it upon ourselves to take K to a free Shriner's Health Screening. The Doctor there saw us for about 2 minutes and told us he thought it was a club foot. Which made us feel better. So a month after the free screening it was finally time for our appointment at Shriner's. We went in with the thought that this was something they could fix, that it was a problem in her bones. Boy were we wrong, it would hit us upside the head when they diagnosed her with a neurological disorder called Lumbar plexopathy. Basically they said that somewhere down her lumbar region her brain is not talking to her nerves & blood vessels in her right side (that is why her right foot & leg is always cold). There was no cure and no fix they would tell us. They then went on to tell us that she is now considered permanently disabled. Know the Doctors, Occupational Therapists and Physical Therapists were amazed at how well K had developed, they are amazed that K can even support weight on that leg or that she even uses her right hand and she was actually developmentally on target. She was fitted with a plastic brace that day, which K hated and within 2 hours of first putting it on, learned how to take it off. It was a battle and still do this day is a battle for her to keep her brace on. We then meet with the Neurologist in May, his news was even more heartbreaking. He said that she would never walk with out assistance. That there is a good chance she may even need a wheelchair. I walked away crushed.

My daughter on the other hand had other ideas. She decided a few months later to take her first steps, within a week, she took her first steps without her brace on either. We were amazed in absolute awe. All we could do was Thank God for the miracle he had given us because that is what those steps were. Then as I had mentioned on my September 7, 07 post, K wiggled her toes, something that no one every dreamed would happen. When she wiggled them, she even surprised herself, it was another miracle. After our visit to Shriner's, where they were also shocked, amazed, confused and wondering how she could wiggle them, they ordered a new round of tests, one of them was a nerve conduction study.

On October 30, 2007, K had her never conduction test. It was given by one of the top doctor's in the field. She was this little short, white-hair women who was probably in her 60's. The test lasted for about an hour and when we walked in she said "we know why your daughter has paralysis, she had Polio". My Mom and I stood there stunned, and I even had to ask her again to make sure I understood what she said "Did you say Polio???" and again she repeated herself. I was shocked, I couldn't think, I couldn't talk, I just wanted to grab my daughter from the Nurse that was holding her and never let go of her. I was crushed, in that moment thousands of questions I had were answered but that also left so many things unanswered. I had so much hatred for the adoption agency who referred her because I know they knew there was a problem and if they would have told me, I would have payed for any medical costs so that way she maybe wouldn't have the long term effects that she has and also she wouldn't have had to lay there for months and suffer from the Polio like she had. I lived in a fog, I couldn't talk to anyone, I pulled away from friends, family and anyone who cared. The Doctors had told me if I hadn't gotten her at of the orphanage at the time I had, she would have died in there, her Polio was that severe that they were amazed still that she was alive. Even though the SOS clinic in Vietnam didn't treat her for the correct thing, the medicines that they did give me helped save her life. K has one of the rarest forms of Polio, it only occurs in 0.1-0.2% of the population that gets Polio. It is called Paralytic Polio and it paralyzes one entire side of the body, be it the right or left. Which in K's case it was the right side, that's why I thought she had a stroke. The downside is that we don't know what the future holds for K, we battles daily pain, we don't know how much strength she will regain and there is also post polio syndrome which can hit when she is a teenager and send her right back to how she was when I meet her in the orphanage. The only thing we can do is live each day for what it is, be it good or bad, and trust me she has alot of bad days. I get asked often if I would change any of this, of course that's a silly question because I would make sure K wasn't sick at all but that's not a choice.

I wanted to share our story because trust me I did my research before adopting on possible diseases that a child coming from an Asian country can be exposed to and trust me, this was something not even on the radar. Never once was it mentioned on the Internet, state department websites, homestudy agency paperwork, adoption agency paperwork, etc, that Polio is still a very real, life-threatening disease in Vietnam, China and any Asian or African country. Since it's been non-existent around here since the 70's, it's something that never crosses our mind. There is a very real chance that your child has been exposed to Polio but luckily that it's also very rare if they have any long lasting problems. Polio presents itself like a flu, with flu like symptoms, so if your child is sick when you receive them please remember to keep this in the back of your mind that it may just not be a flu they have. So I hope I didn't scare anyone because that's the last thing I would want to do but I wanted this to at least be in the back of your brain if your child is sick when you get them because I think if someone would have told me this before I adopted, there is a good chance I would have recognized the symptoms and we would have not had to go through the anguish of the last year.


Corey said...

As always you are in my heart, prayers and thoughts

Shelby said...

We continue to pray for K and you everyday. That was a very wonderful thing you did by getting that warning out for other families.

Princess D said...

I just found your blog through Holly's. Wow, you guys have been through it the last few years. I am so glad that you were finally given some answers even though it must have been so painful to find out. I pray and hope that K will only get better from this point. She is beautiful and adorable. Glad I found ya :-)

Cindy said...

Please give sweet K a big Hug & Kiss from her Auntie in NH.

Love you guys!

Susan said...

Heather~ I've often thought of you and little K and wondered how things were going for you two. I'm glad that, at least, you have a diagnosis, something to work on without still being confused about the cause. She's so beautiful, you two are so lucky to have each other. My thoughts are will continue to be with you both.
susan c.