Monday, March 22, 2010

Craniosynostosis

A fair warning, this will be too much information for the casual blog stalker so feel free to stop reading any time. I've been debating for a while whether or not to post about our little girl's medical concern. I know many of you are probably curious, and well, all too soon it may become readily apparent if she needs to have surgery because she will be sporting a large zigzag scar, running from ear to ear, across the top of her head.

Our little girl has craniosynostosis. Craniosynostosis is a birth defect in which one or more of the sutures (fibrous joints) between the bones of an infant's skull close prematurely, before the infant's brain is fully formed. As a result, the infant's brain can't grow in its natural shape and it is forced to grow in the direction of the open sutures, often resulting in an abnormal head shape and facial features. Treatment of craniosynostosis usually requires surgery to separate the fused bones. Sometimes the condition only affects the physical appearance of the head, but it can inhibit brain growth and also lead to increased intracranial and intraorbital pressure. Craniosynostosis can occur by itself or it can be associated with a syndrome that affects not only the skull but the extremities and multiple body systems as well. Syndromic craniosynostosis requires numerous surgeries to correct defects throughout the body and can cause blindness, deafness, and developmental delays.

Syndromic craniosynostosis was one of our biggest concerns after receiving our little girl's somewhat cryptic medical reports prior to receiving her referral. From what I can gather she has at least two fused sutures with the possibility of a third. Multiple fusions along with the specific sutures that are fused in our little one occur more frequently in a syndrome. Even though it sounded like that was a possibility, and a very scary one at that, we knew we could not turn this little one down. We were trusting that God would equip us to handle whatever came to be and would provide for us financially for as many surgeries as needed. After lots of research, prayer, and coming to terms with the worst case scenario we let our caseworker know that whenever the referral was ready we were ready to hear about our daughter. Sara then told us that she had talked at length to the in-country staff that morning and found out that the neurosurgeon in Ethiopia thought it likely that she would not need surgery! She also told us that just by looking at the photos of our girl you could not tell that she even has craniosynostosis. What a relief after picturing in our minds the worst case scenario. Later that day we laid eyes on the most beautiful three month old girl and life as we knew it has never been the same :)

Nothing about her medical diagnosis is certain at this time, and for a woman who likes to plan ahead and be prepared, this not knowing anything is killing me. As far as we can tell our little girl does not have syndromic craniosynostosis. We had her X-rays and CT scans sent to a team of specialists in the US in hopes of a more definitive diagnosis; however, it seems that doctors in the US are a little out of practice when it comes to reading 3rd world radiological technologies. Much to my dismay, they cannot determine a whole lot from the current scans and we now have to wait until she comes home to get any answers about her diagnosis and surgery prospects. In January I wishfully set up an appointment for her for April 20th hoping for a miracle that she'd be here by then. I guess I need to reschedule that.

For the last eight weeks we have been anxiously waiting for news of a court date because surgery for craniosynostosis is usually advised as early as possible and preferably by six months of age. Our girl turned five months old last week. I had hoped that things would move along a little faster because of her medical need. Our wonderful agency assured us that they would do everything within their control to get us a court date as soon as possible and give us priority on travel, if only all the other parties involved were as kindly accommodating.

I just want to take one more moment to be totally honest (if I still have any readers left) and add that saying yes to being open to certain special needs on paper really did not prepare us emotionally for the reality of when we were asked "will you consider this little one?" It is heart wrenching to even think of saying no to a little one in need and yet it can also be heart wrenching to say yes. To know that your child may have to deal with lifelong medical issues or disabilities. To know that your life may look different than you had imagined. Even though we signed up for this and thought we were prepared for it, I actually went through a short period of grieving for each child with whom we were matched, grieving both selfishly and for the girls, for what might await them down the road. I am still very sad at the thought of my newly adopted baby going through major surgery so soon after we bring her home. (What will that do to her attachment?) No one wants their own child to deal with these kinds of things, but the reality is there are children in the world who are waiting for a family that will love and care for them no matter what their needs. At the beginning of our adoption journey I felt God leading me to be open to more than just a healthy, "perfect" child and I'm glad for that. I'm glad for the many ways it has challenged me to grow and mature both in faith and character.

15 comments:

Janel said...

Love your honest and open thoughts....on a very small scale I can relate to this with Samuel and still not knowing for sure if he has sickle cell. God is surely increasing your faith through this!!!!!!!!! Still praying for you and your sweetie girl. :)

Sondra said...

Lisa,

Thanks for the update and info. We are praying for your little girl to arrive soon and that she will get any medical care if she needs it, but hopefully she won't! We are so excited to meet her!

Sondra

Matt and Kristi said...

I will love her and kiss her little head no matter what shape it is. :)

J Gutwein said...

:). Love J

ReSoNate said...

It has been a privilege to follow your story. Thanks for sharing with the blogosphere. Your trust in the Lord is apparent as you have made yourselves available to all that God has for you. I pray a blessing of His abundant grace for you in the coming season. We recently received a referral for a 4 mos girl and a 2 year old boy. You never know, we could be travelling about the same time... although with different agencies. Blessings!

Jan said...

Thanks for the update and we will continue to pray for both you and your sweet little girl and for God's blessing upon her. May His hand be upon all of you during this time.

Claire said...

Lisa - so sorry to hear you've been dealing with this, but it sounds like you're handling it really well. From our point of view, she looked like a perfectly healthy, beautiful little baby! Keeping my fingers crossed for a court date soon!
Claire

Laura said...

I'm praying for ms. chubby cheeks and her sweet little head. I'm praying for your court date to come!!! I know you and Travis will make terrific parents for this little girl, and she is so blessed to have parents that were open to accepting a baby with special medical concerns.

Mark and Heidi said...

I am so glad you posted this, Lisa, and I thank you for it. I don't think it was in any way too much, even for a casual reader, and I think it is great for people to see the courage and love you two have. I am praying that your court date comes very quickly, as in this week, and for the best case scenario with her condition.

Much Love,
Heidi

(oh, and I got through your post dry eyed but then your sister's comment totally made me cry!)

The Busters said...

Hi Lisa! Thank you so much for sharing! I actually have a friend whose son just recently had surgery for craniosyntosis. She has a blog: http://bensheadblog.blogspot.com/
Her email is on the blog and I know she would be totally fine with you contacting her. Her name is Maggie and she is super nice. She also told me about www.craniokids.org. You may already know about it but Maggie said it has been a great resource for them! I am praying for a speedy court date so you can get your girl home! Like Heidi, I totally cried at your sister's sweet comment. Thinking of you! Hugs, Emily B.

Leanne said...

Thank you for your good thoughts re: our court date and for sharing your amazing story!!!

Sending good thoughts your way!

The Busters said...

Hi Lisa!! I am so glad you found it helpful to read my friend's blog. She told me if you ever want to email her she would be totally happy to answer any questions. I imagine being able to read accounts of other peoples' experiences is very therapeutic. You come into my thoughts many times throughout the day!!
And THANK YOU for sharing in my excitement for moving up the waitlist!! Hoping I have good news soon. :) Take Care!!!

Mark and Heidi said...

COME ON COURT DATE!!!!!

emily said...

What a great post. I often wonder if I would have had the courage to say "yes" had we known about Abe's special needs. He knew our needs so much more though as this child is an amazing gift! Know your daughter will be such a gift.

Tam and Kai - NYC said...

I'm so glad you posted such an honest, heartfelt story about your experience. We're all praying for your speedy court date and to bringing your little girl home.