I could not start a new blog about Haleigh with out filling in where we started from...Her birth.
Haleigh was born on a monday afternoon in November 2008, she was 5 weeks early and weighed in at 5pounds 2 ounces and was 18inches long. Haleigh is my 5th child and my 1st VBAC (Vag birth after a c-section), I had no problems through her labor and delivery her heartrate dropped once during labor and then again when she was almost born, right as she was delivered.
The problem was a true knot in her cord, true knots happen in 1% of all births in the USA, and a lot of babies die before they are born sometime in the 37th week because of the knot, I am lucky to have had Haleigh early. When she was born after they weighed her and before they handed her back to me, my nurse told me that Haleigh has a small birthmark on her face and a lot of bruises from the birth.
My OBGYN said the bruises were from him grabbing her face, he did that because her heart rate had fallen. When the bruise did not go away we saw her doctor who then told us the whole mark was a brithmark, but he didn't know what the name of it was.
We did get a name later on
Giant Congenital Nevus
While Haleigh has been to many many doctors for more than this problem this blog is about the Nevus not feeding problems that have mostly gone away now, that she is older.
Haleigh went to see a plastic surgeon when she was about 6 months old, he told us that it was unfortunate that her nevus was on her face, but removal was not something her was willing to do... sorry.
Haleigh has seen a derm. in Birmingham last winter who told us to leave her alone and not to make it a big deal, they also said if we removed it she needed to be 10-12 years old.
I didn't know where else to turn since our Dr. was the one sending us to these other doctors. I thought they knew more than I did and were right.
But you know what kids are mean and sometimes people who should know better than to say a word are mean and rude too. The more comments I have gotten on her birthmark the more I realized it has to go!!
I researched and found a doctor in LA who does these surgeries all over the world. I called and while they would have seen Haleigh I was given the name of a Facial Plastic Surgery in Panama City Fl. He was a great doctor and said he would do her surgeries (8 of them) for 100$ each, the problem is the surgery center where he does surgery is 3,070 for each surgery and the hospital that we could go for is even more than that. The cost puts that out of reach for us. And that suck!
I came home from that appointment and searched the internet and found 2 foundations that help children like Haleigh, they are
1. Shriners Hospital
2. Fresh Start Surgical gifts
today I found a 3rd.
3. Emergence surgical Gifts
I have sent applications to the 1st 2 foundations and I am sending the 3rd one with in the next 2 days. I have heard from the Shriners, her case has to go in front of the cheif of surgery and the the reviwe board after that we will be contacted. But at least I know they got everything they needed from me. They are in Tx.
Fresh Start I have not heard from they have reviews 7 times a year and I am not sure when their next one is, so I do not even know if they have looked at her app. yet, but it didn't come back so the must have got it. They are in Cail.
Emergence is in Alanta Ga.
All of these places pay for everything related to the surgery including travel and hotels. I am so glad there are people out there like these to help children like Haleigh, if not for them then WHO!