Anakin's Page

My name is Joanne and my husband Scott and I have four wonderful children. Justin who is nine, Adrianna who is six. Anakin and Logan, my twins, are one.

We were thrilled when we found out we were having twins. I was over 30 and I had to go to Allentown to be seen at Lehigh Valley Hospital. They always assured me that both the babies were perfect. I went into early labor at 32 weeks. I was scared. This was going to be another c-section because I had to have two others, plus both babies were breech.

I arrived at General Hospital and they told me it was my water that was broke. I then was transferred to CMC Hospital in Scranton. They stopped my contractions and gave me the steroid to help develop the babies lungs. Once that was done, they took me off the medicine that was stopping my contractions and we were going to let whatever was to happen, happen. I was transferred to another room. Once that happened and I ate my supper, I had to go to the bathroom and then realized it was time. I called for the nurse and they had me go right back where I came from. I then was checked by the doctor and I was 4cm. dilated. I was prepped for the c-section and away I went.

I was absolutely petrified, I kept asking my husband if the babies were okay. When they finally got to the babies, they had Anakin out first then Logan. I was shocked when they said something was wrong with baby "a", which was Anakin. My husband said his face and hands had something wrong with them. They showed me Logan but they took Anakin right to the NICU because he was having trouble breathing. I could not stop crying. I had no idea what was happening to my baby. He was intubated for a while, the doctors kept trying to extubate him but they could not. They sent out his chromosome test and it came back that he had Apert Syndrome.

I spent days reading about this because it is so rare. He was sent to Children's Hospital of Philadelphia for a trach evaluation but at this time they were able to put him on a very strong dose of steroids to help the swelling in his airway come down and he was put on oxygen. He then needed to learn to eat off a special bottle known as the Haberman because he has a high palate. He would sound noisy after eating but they assured me this was nothing to be worried about. He finally came home after 2 months in the hospital.

In March he kept bringing everything up that he ate and it was taking him forever to gain a pound. I told the docs my concerns down CHOP and since he was going for his first hand separation on April 7th they were going to address all his issues then. He spent 4 months in the hospital after his hand surgery because he ended up getting a GI tube and his trach and then on July 11th he had his first cranial surgery. He had his second hand surgery on Sept. 8th and he now has all four digits on each hand. He is going for his second cranial on January 4th.

His brother's and sister love him so very much. He is the highlight of our day. I am so very blessed to have him. God has blessed me with four wonderful children. God Bless All of You and your families. Thank you for letting me share Anakin's story with you.

Sincerely, Joanne Neff

This page was updated November 19, 2006

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