LUKE

When my son Luke was born on April 9^th, 2001, I was overjoyed and so happy that he looked perfectly normal and had 10 fingers and 10 toes.  I looked him all over, not expecting anything to be wrong because I have no family history of any diseases or anything.  All of my sisters have had healthy, big babies and I knew Luke would be the same. 

It wasn’t until two days later, when the pediatrician came to examine Luke and discuss him with me that I was clued in that he may have something wrong.  I was dumbstruck as the doctor, who I was beginning to loathe, asked me if Luke’s father, who had deceased, had any kind of syndromal facial anomaly along with his congenital and hereditary deafness.  I answered that of course he did not, and I didn’t know what she was talking about.  She said that Luke’s eyes were asymmetrical and that he would have one eye larger and higher than the other for the rest of his life.  Already in the early stages of a two-week long bout of baby blues, I cried and cried, feeling hopeless for my new baby to have a normal appearance.

As I came out of the obligatory blues, I knew Luke was the most beautiful baby ever born and there was absolutely nothing wrong with him.  His pediatrician reinforced this, as she never once let on that she noticed anything wrong with his eyes or head.  I always suspected something was wrong with his little skull, but I had no idea what it may be called or what the symptoms were.  I just knew that Luke’s head had a little ridge along the side and that one side of his forehead stuck out further than the other.  I thought it would go away as he aged, but it never seemed to get better.  I especially hated holding him up to a mirror, where his asymmetry was even more pronounced and I just felt sorry for him.

When Luke was six months old, because of insurance reasons I had to change pediatricians.  I took him to his new doctor and immediately when he walked into the room, he asked me about Luke’s constant lean to his left.  I told him that he had always done that, seeming to favor using his right eye but that his muscles didn’t seem stiff in his neck.  He suggested that Luke might have torticollis, a muscular problem with his neck muscles that may cause Plagiocephaly.  He pointed out Luke’s asymmetry and said that it may be related to the torticollis.  I was reeling as I left the doctor’s office for the prescribed neck x-rays.  Finally someone had pointed out that Luke might have a problem.  Finally something was going to be done about it!

At the hospital, I wasn’t even upset to turn Luke over to the nurses.  I was so confident in my decision, had prayed so hard for so long about it, that I knew he was going to be fine.  I didn’t cry, just kind of held my breath and walked out, flanked by many family members.  After four and a half hours, they wheeled my baby out past the waiting room and I saw his new face for the first time.  Then I let it go, crying tears of joy.  He was beautiful, and looked so different, so normal!  The next few days were hard, with the swelling and Luke’s inability to eat much, but by the next week, we celebrated Christmas Eve with so much joy and so much to be thankful for. 

 

-After getting through this experience, I know that support is the number one thing I needed.  Anyone who needs it or has any questions please write to me at allisonandluke@aol.com.  Just know that you are definitely not alone

 

 

Luke on July 4th, 2001 at almost 3 months old.  Amazingly he wasn't diagnosed for another 4 months!

Luke, 48 hours post-op

Luke 3.5 months post- op

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©Craniosynostosis And Positional Plagiocephaly Support, Inc.2001