Joshua's Story

When you are expecting a child, a very very wanted child, you naturally want, and EXPECT, everything to go according to plan. You feel that child inside you, moving, growing larger and you dream of what he will look like. Will he have dark hair or blond? Brown eyes or blue? Will he like art or music, or instead enjoy math and science? These are the things you think of when you are carrying a child. The thought of anything not being perfect with that child does not even enter your mind. Or at least, you wont allow that thought to enter your head.

It was March 1991. My husband and I were expecting a son. It was my second child, his first. I had been previously married and already had a four year old son, so this whole "baby thing" was not new to me, but it was to my husband, who was thrilled to become a father for the first time. We had chosen the name Joshua Lee. We painted the nursery and a brand new set of little baby boy clothes was folded neatly in his little dresser, and stacks of diapers awaited him on his changing table. We were ecstatically happy.

The day arrived for my scheduled Caesarian section. The delivery went according to plan, and they held up to me this adorable little boy with a shock of blond hair and a slightly crooked nose, still covered with little smudges of blood from the delivery. I remember telling my husband he looked like he had fallen down after skateboarding. He was beautiful. My husband accompanied the nursery staff to the hospital nursery to videotape all the necessary measuring and weighing of our newborn son. Everything seemed perfectly normal.

When I was finally able to hold my child, I of course examined every inch. I counted every finger and every toe , felt the soft skin of his cheeks, and gently rubbed his little head. While doing this, I noticed his head was hard. Very hard. There was no "soft spot" at all. I could remember from my older son a very definite fontanel there, with a pulse you could see. I asked the pediatrician at the hospital about it and he assured me that Joshua was fine. A nice, healthy boy.

We took Joshua home and everything did in fact seem normal, though the shape of his head still really bothered me. I was beginning to notice that when you looked at him from a certain angle, you could see a slight bulging in his forehead and one eye looked slightly lower than the other. The doctor still seemed to feel Joshua was fine. A bout of respiratory illness at six weeks brought Joshua into an urgent care center, where a round of x-rays revealed he had a mild pneumonia. The observant doctor we saw that day on a hunch also did some x-rays of Joshua's head. After he recovered from the pneumonia, this doctor summoned me to his office. I was assuming it was to discuss his pneumonia, but this was not to be the reason. Dr. Lopez informed us our son had a very severe form of a birth defect known as Craniosynostosis.This is where the bone sutures of the head close prematurely, not allowing for proper brain growth. Normally, closure is not complete until eighteen-months of age. He needed immediate surgery to correct the problem. If we refused the surgery, we were facing sure deformities, mental retardation, and possibly even death. I remember sitting there and feeling the room instantly go cold and black. I could see the doctor's lips moving...but everything felt hazy. The doctor was very kind and told me how he felt when he found out his infant daughter had needed heart surgery, but assured me that all would be well and he would send me to a wonderful neurosurgeon. NEUROSURGEON. Just the sound of that word, to this day sends chills down my spine. But he did indeed send us to a wonderful neurosurgeon.

Dr.Doby was a skilled surgeon who had performed this type of surgery on many young children. I felt very confident placing Joshua in his hands. He went through the details of the procedure, and just listening to them made me want to run screaming from the office. The details of moving eye orbits and rotating his forehead sounded so horrible to me, and I remember being in tears as I relayed the details to my husband over the phone. Yet deep in my heart, I knew, I just knew, that Joshua would be okay with Dr. Doby.

Finally the day came for the surgery. I had donated blood for Joshua two weeks ahead of time, to be used if needed during the surgery. We waited as they prepped our little son for surgery and got an I.V. going in him, and had him sedated. They wheeled him out on a gurney past us and I remember the noises he made reminded me of a cat, not a little baby, and it was heartbreaking to see. My husband and I, and the grandmothers and grandfathers were gathered around him, and that was the first time I had ever seen my husband cry. Yet still, that little voice in my head kept saying "it's going to be ok. Joshua is going to be ok. DO NOT WORRY"...Eight hours and two pints of blood later, Joshua came out of surgery. His tiny head wrapped like a turban. There was no immediate room for him in the pediatric intensive care so they moved him temporarily into regular intensive care. They let us go in one at a time to see him and I went in first. The noises in that unit were frightening, and I did not want my baby in there long. I went to where they were getting Joshua settled and saw a large team bustling around him, attending to tubes and equipment. His eyes had not quite swollen shut and so he looked and saw me and started to whimper. I got down real close to him and just spoke softly to him to let him know I was there and that he was going to be okay. It was very difficult to leave, but they were insistent after a few minutes that I needed to go, and that his father could come in for a few minutes. We went to get some fresh air and a little bite to eat, and when we came back to the hospital were met by my brother in law and sister in law who told us that Joshua had been moved to the Pediatric Intensive Care Unit. I was so relieved!! This was a much more cheerful place , where parents could stay all day with their child.

　

I was not allowed to spend the night with Joshua in intensive care, but as soon as I awoke the next morning, I called the hospital and they assured me Josh was doing well. We spent the first of many days there, soothing him through his pain and comforting him, as his eyes were swollen shut and he could not see us. But he knew we were there, and his condition improved. After a week, his eyes were open and he was well enough to go home. He recovered beautifully, and the hardest thing to deal with at that time was the reaction to his scar. It really was something to look at. It stretched from ear to ear over the top of his head like a headband, and the glares and horrified looks from people made me feel bad for Joshua. But his hair grew and covered the scar.

Over the next two years Joshua needed two more surgeries, both long and grueling to reshape his skull . A plastic surgeon was involved in the second surgery, and they used bone grafts to cover parts in his skull where the bone had not grown properly. Being the trooper that he was, Joshua endured these surgeries with a smile and bounced back beautifully after each one. He has not needed a surgery since the final one at age two.

Despite worrying about possible neurological issues, or problems with eyesight, Joshua has always been a completely normal boy. He was a wonderful student, enrolled in the gifted program at school and made stellar grades. A gifted athlete, he played soccer, basketball, and baseball, with baseball being the sport he really excelled in.

Joshua is eighteen years old now. A tall kid, with strong arms from his new passion of weight lifting, he will start college courses soon and begin to find his own way in the world. So as I look back on those early days of worry, I can still remember that little voice in my head saying...."it's going to be ok. Joshua is going to be ok. DO NOT WORRY"....and I know that little voice was indeed right