October 20, 2008 birthmark, Family Stories, GWCA, Skin Conditions, Sturge Weber Syndrome, Vascular System 0 Comments

by Monica, big sister to Reese, from China, who has Sturge-Weber Syndrome

We originally were aiming to go to China for a NSN girl, as young as possible. As we were gathering paperwork, some friends called us and said, “you have to look at these kids on your agency’s waiting list”. We did, and found several we would have been willing to adopt. We put in 2 or 3 applications, being told another family had been picked for the child.We were becoming disheartened. Finally, with the last little girl, a girl we felt strongly about, when we were told a family had her file, and it was promising that they would accept the referral, we told them that if the family fell through to remember us. We didn’t expect to get a call, nor did we get our hopes up. Probably a month later, after watching this little girl still be marked as ‘OPEN’ on the list, we received a call asking us if we would like her. She was the last child ‘OPEN’ on the list, a little girl. We said yes and submitted our LOI (letter of intent) and medical planning form to China on May 5, 2006. We received PA (pre-approval) on June 13, 2006. After a lot of setbacks with paperwork expiring or being done incorrectly, we were finally DTC (dossier to China) for Dang Kai Jin, a 2 year old girl from Taiyuan SWI in Shanxi province, in December 2006. She had a port wine stain birthmark on the right side of her face, and her lower extremities, although we didn’t know that until we got her, and congenital glaucoma in her right eye. She was said to have Sturge-Weber Syndrome, a rare syndrome that usually involves seizures and calcification of the brain. We took a leap of faith and decided to adopt her. Through contact with the foundation that had her in foster care, we discovered that, to the best of their knowledge, she’d never had a seizure and was developmentally on target or ahead.
We used Great Wall China Adoption (GWCA), and we were happy with the experience we had with them, aside from the fact they had very little clue about things to do in Shanxi province, a rarely traveled to province for adoptions in our agency. Our guides were excellent, particularly Michelle, whom we had in Beijing and Taiyuan.

We traveled to China in May 2007. Reese (Dang Kai Jin) came to us screaming and crying. She had scabs above and below her left eye. The orphanage director told she had gotten them being “naughty” jumping on a bed and fell off and hit the bed, scraping her face. For some reason, she had been removed from her foster home and put back in the orphanage, which she hadn’t been in since she was roughly 2 months old, instead of being put back in the foundation’s facility there in Taiyuan, as we were told she would be. We had several days thereafter where she cried herself to sleep with Mom walking her up and down the halls at night. I think she just passed out from exhaustion one night while we were in Taiyuan for about 3 hours, then woke up and ate cold dumplings and passed back out. She fell asleep in bed with Mom in Guangzhou without being walked up and down the halls. She adjusted to us, and we heard MaMa and Jie Jie and wo ai ni before we left Taiyuan.

The only real problem with attachment we had was for a month or two after got home with Reese and our dad. She would have nothing to do with him. He couldn’t hold her for any reason except to get her to something else she wanted (food, MaMa, etc.). He was a means to an end for the longest. She would not go to sleep with him in the bed. He had to go to bed after she fell asleep if she fell asleep in Mom and Dad’s bed. Most nights Mom tried to get her to go to sleep on a pallet in her room, as she wouldn’t sleep on the bed. For quite some time, it was me or Mom. We were the only ones who would do. Dad was no consolation. Now, 11 months after getting her, Reese is such a Daddy’s girl. She loves horse-playing with him and looking at the moon with him. She even goes to bed with him at night because if Mom is in there, she gets slack-jawed and talks and talks. For about a month or two after we got home, her sleep schedule was completely out of whack. Getting her to sleep was difficult, getting her to stay asleep was difficult, and she would periodically wake up screaming and crying but wouldn’t wake up. This was basically the only time Dad could hold her during that period because she wasn’t conscious of what was happening.

We took on Reese’s special need because I was born with a birthmark that usually fades with time. My birthmark is still somewhat visible and becomes more so when I’m hot, cold, upset, or running a fever. Much the same as Reese’s gets darker, although they’re different types of birthmarks. Reese has somewhat regular laser treatments to help break up and fade out her birthmark. She’s had 2 since she got home and had 5 on her face (but not her legs) in China before we got her. She’s having another in June. The pressure in her affected eye is checked roughly every 3 months. Currently, she has eye drops twice a day to control the pressure. The surgical procedure she had in China in November 2006 is still mostly controlling her intraocular pressure, but the drops help it. She has what is referred to as Type 2 Sturge-Weber Syndrome (SWS), which is one of the rarest forms of SWS. It is the version that has the outward signs (glaucoma and birthmarks) without the inward (seizures and calcification of the brain). She had an MRI right after she got home that showed no signs of any irregularities. She’s a very bright child for her age, very precocious, and came to us speaking Chinese like a 4 year old, or so we were told. She speaks English quite well now. The main time you can’t understand her is when she goes off on a random tangent that is a completely different topic from what she was talking about.

You can view our story, life with Reese and her SN, and plenty of pictures here.

Leave a Reply

Your email address will not be published. Required fields are marked *

© 2024 No Hands But Ours

The content found on the No Hands But Ours website is not approved, endorsed, curated or edited by medical professionals. Consult a doctor with expertise in the special needs of interest to you.