|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
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
Sincerely, Joanne Neff