Monday, January 19, 2009

Medical Update

My little Mamushay has an array of issues. I was told by my agency on several occasions that Mamush's eye problem resulted from a parasite and that he had been treated for it. I'm not sure where they got that information since I never saw a profile on him. I was also told that it was AWOP's responsibility for his medical. You'd think that my agency would ensure that he actually had a medical assessment when they took responsibility of him... Or is this another case of incompetence like Maritu's story? I don't know the answer, but I can say it's bad business... So, what's going on with Mamush? He has a congenital eye problem called coloboma. He never had a freakin parasite! You can tell because he has no residual inflammation in his eye that would be expected had he had a parasite. He is blind in that eye, and it is not treatable. This wouldn't be too bad, and the outcome the same as our worst case senario if his "parasite" diagnosis were true, but a coloboma in a child is indicative of other problems. Now 2+2 is adding up. Here is some information on this condition:

What is Coloboma?
A coloboma is a gap in part of the structures of the eye. This gap can be large or small and is normally in the bottom part of the eye. A coloboma is caused when a baby’s eyes do not develop properly during pregnancy. The eyes develop between the fourth and anything up to the fifteenth week of pregnancy, though development is usually completed around eight weeks. This condition occurs in about 1 in 10,000 births.
Coloboma can affect one eye (unilateral) or both eyes (bilateral). Coloboma can affect a number of different parts of the eye. A coloboma does not mean that there is a hole in the eye, but that certain structures or parts within the eye did not fully form.
Which parts of the eye does a coloboma effect?
A coloboma can affect the iris which is the coloured part at the front of the eye. It can affect the lens, the part of the eye which helps focus light onto the retina. Coloboma can also affect the choroid which is a thin network of blood vessels which help to keep the retina healthy. Finally, it can affect the retina at the back of the eye. Very rarely coloboma can also affect the optic disc or the eyelid.

Does it only affect the eyes?
Sometimes children with coloboma may have other problems and some 'syndromes' which include coloboma, such as CHARGE, a rare condition which stands for:
C - coloboma
H - heart defects
A - atresia of the choanae (problems with the nose passages)
R - retarded growth and developments
G - genital hypoplasia (undescended testicles)
E - ear abnormalities.

Now when I said that 2+2 was adding up, that was because Mamush has most of the Charge problems... I believe this labels Mamush as "special needs." This makes my heart ache for him. It also upsets me because our fees should have been discounted. Now, I guess I'll see how my agency handles this situation. I'll post if they make good on their claim of discounting fees for special needs children... If not, I've got a loud voice... I think this is the test of a good agency, but until then, it looks like we spend our days in the offices of our pediatrician, ENT, urologist, pediatric opthamologist, and cardiologist.

So how's Ms. Maritu? Well, her TB test was negative. So, she never had a difinitive diagnosis of TB. She has also had a negative TB test, negative x-ray, and 3 negative gastric washings. What more could the Health Department want? They've been calling the house but don't leave messages. I've called and left voice mails to no avail, so we'll see how this ends. Surely, they will accept all of this proof and not make her take any more medicines. She has already been exposed to 4 TB meds for a month that she did not need.

On a good note, we evaded lice, scabies, and ring worm! (but not Giardia) Yea!!!


  1. Holly, I am so sorry to hear about these problems for Mamush. I will keep all of you in my prayers. I hope you get the whole TB thing resolved soon too. What a pain to have to deal with while trying to get settled in with your new babies.

    I love your new blog format... so pretty! :)

  2. Holly,
    LOVE the new blogs format! So sorry to hear about Mamush. When I first saw his picture, I was very concerned about his eye. I pray that he doesn't develop any of the other health issues. He is very blessed to have a family who will give him the medical attention he deserves.

    They are both SUPER cuties. Here if you need to talk!

  3. I am so sorry to hear about all you are going through! We'll keep you in our prayers!!!

  4. I'm sorry about all the unexpected health problems, but I'm glad that you're taking it all in stride. And thank goodness you avoided all the itchy parasites during your trip!

  5. Love the new blog.
    SO sorry to hear Mamush has these health issues. I hope you get everything resolved!

  6. Holly I am so sorry that you are having to go through this. I am sure God knew what he was doing placing sweet little Mamush in your loving, caring, and knowledgable hands. I can't think of a better, more qualified family for this sweet little boy. That being said, I feel your pain and frustration!!! I am so happy all is well with little Miss Maritu.
    Thinking and praying for you and yours!!


  7. wow Holly you have been a very busy women lately. I hope things work out for Mamush. I will keep your family in my prayers.


  8. Holly, I think that little Mamush is very lucky to have ended up with you. As you know the knowledge and expertise of the doctors in Ethiopia is limited at best. It seems that God knew you would have the heart and the resources to help that sweet baby. Just like with our biological children, unfortunately, you don't know what you're going to get until you get it, but it's generally for a higher purpose. God Bless You and I pray for Mamush and Maritu.

  9. Wow, Holly I can't believe what you have been dealing with. I will be praying for Mamush and that the agency handles things with integrity. Your two little one's are just adorable, so hopefully all this sickness stuff will pass quickly.

  10. Good for you for standing up for your child with your agency. I have a friend using your agency and I have been shocked at the lack of information provided with referrals. I hope you have a good outcome and wish you and your family the best.

  11. Holly,
    See this link:
    They just brought home a little boy who is blind in one eye. They did not know about this either.

  12. heart ache...but they should pay you the fees? did the agency know about the special needs (doesn't sound like they did)... i understand being upset. i do. but, personally, i think energy is better spent on what you *can* do forward and not worry about what you didn't get.

    i don't mean that to sound mean... just was a little taken aback by the discrepancy there.

  13. No Miss Melissa, my agency should not pay me fees(lol!), but they have said that they discount fees of special needs children and children over the age of 10... I guess that is only if the agency performs a medical exam on the child when they accept care of him, huh? Maybe this was a "Don't ask, Don't tell" in order to get higher fees? maybe, but then again maybe not. Could be why so many older kids are "underaged" too... It's not good agency practice to not do a medical exam on a child that you are placing! He had been in their care for 14 months!!! All I am upset with is the agency incompetence. If you'd like to learn more, look at my old blog and check out the posts of when we were in Ethiopia... Still not enough? Call me and I can really give you scoop on goings on...