2000-08-17-16 China © Marilyn www.thefetus.net/
China Page Hutchinson was born on December 31, 1996. Prior to her arrival, we were the model family. When we found out we were expecting another child, we felt we were seasoned parents and eager to take on the challenge of raising three children. Little did we know that this birth would forever change our lives.
During the early part of the pregnancy, check-ups were normal and the first ultrasound was performed. It showed a due date of about three weeks later than I had calculated. I thought this a little strange as I knew pretty well the exact time but we shrugged it off as being nothing. My obstetrician suggested a second ultrasound a couple of months later to pinpoint the due date and because of my age. I was 36 at the time. The second ultrasound was uneventful, at least at the doctor’s office. I had been home a few hours when the nurse called and said that one of the baby’s kidneys looked a little small and that it was probably nothing but they would like for me to see a doctor specializing in sonography to have another ultrasound. She had scheduled an appointment for the next week. I was uneasy but she assured me that everything was okay.
At the visit with the specialist, the doctor found that one kidney was smaller than normal and the baby was very small. He made various measurements of the baby. I was asked had I been working more than usual, exercising, dieting, anything different about this pregnancy. My answers were all "No". I felt fine and this pregnancy seemed no different than the other two. I was instructed to rest as much as possible and he would see if the increased rest would help the situation. Leaving the office that day, my emotions were heightened as I thought about what I had just heard. Somehow I just didn’t think anything was wrong with this baby. Everything seemed too normal. Surely this doctor was wrong.
The next few weeks, I followed the doctor’s instructions as much as I could with a three-year old and a 1-year old to take care of. We remained optimistic as the pregnancy seemed to progress normally and we prayed the baby would be healthy, as did our family and friends. We were sure the next ultrasound would confirm that a miracle had happened and this baby looked absolutely normal. But to our disappointment, everything looked the same on the next ultrasound-a small baby, with one kidney smaller than normal and this time-abnormalities on the eyes, indicating a possibility of cataracts.
During the last two months of the pregnancy, I had doctor’s visits every week to make sure the baby was okay. Every week was one week longer for the baby to grow and mature. My husband and I vocalized our fears very little as we tried and wanted to believe that we would have a healthy baby.
As the due date got closer, the prognosis remained the same. The Christmas season seemed long and dreary. It had always been my favorite holiday but this year I just wanted it to be over. We put up a good front to the people we encountered, pretending everything was wonderful.
The week before I was to go to the hospital, we met with the obstetrician and sonographer. They told us the baby would more than likely have problems but they weren’t able to give a prognosis and they were vague as to the baby’s chances of survival. I wanted them to tell me something specific was wrong, but they could give us no specific answers. During the early part of the pregnancy, I had declined the amniocentesis. My husband and I had always said we would love and care for any child God gave us, regardless of the baby’s health situation. After our visit that day, we stopped at our church and had prayer with two of our ministers. From that point on, I think our prayers started to change. We knew we would need strength like never before in dealing with what we were about to experience.
The next Monday I was scheduled to go to the hospital. My mother had arrived to watch our two boys. I remember the ride to the hospital being long and tense. Instead of anticipation and joy of an upcoming birth, we were quiet, prayerful, and uneasy. After our arrival at the hospital, labor was induced, and everything was pretty normal. I tried to detect any concern or doubts that the nurses had, but they were good at hiding their concern if they had any. Early the next morning, the doctor gave us the news that a caesarian section would be performed as soon as possible, as the baby’s heartbeat was decreasing with every contraction. I was told that I was third in line for a C-section, later got moved to number two and finally to the number one spot in the "C-section line-up" for the morning. I knew by this urgency, things were not looking good for our baby.
The next few minutes flew by as if everything was going in fast-forward motion. I could sense the feeling of urgency. Before I knew it, the doctor was telling me we had a baby girl. His next words were "I think we did the right thing" referring to the emergency c-section. They quickly let me look at her and then carried her to the critical care unit. She weighed 4 pounds and 9 ounces. As I looked at her for the first time her face seemed a little different. But I thought, "Right after birth, what baby doesn’t look a little strange?" Even at this point, I was still optimistic, holding on to all hope that the doctors had been wrong that we had a perfect little girl. After getting settled into a room, I remember my husband coming in, telling me that China had stopped breathing, and was now on a respirator. She remained on the respirator for three more days, slowly being weaned from it. I held her for the first time two days after her birth. By just looking at her facial features I knew something was different.
The next day, I was released from the hospital- without China, of course. She would stay in the hospital for two weeks. During this time, many tests were performed. Down’s Syndrome was ruled out. We were told we might never have a specific diagnosis. However, two weeks after China’s release from the hospital, geneticists were able, through very sophisticated testing, to give us a diagnosis of Wolf-Hirschhorn Syndrome or 4p-, a partial chromosome deletion occurring in about 1 of every 50,000 births. Traits of the syndrome included slow growth, seizure disorders, severe or profound developmental delays, and many other physical problems. The geneticist, however, was optimistic telling us that no one can know what a child will or will not be able to do unless they are given the chance to reach their maximum potential. Information from the children’s hospital was sent to us the next day. Most of the information was very dated and gave us very little hope.
Those first weeks were like a dream, or I should say -a nightmare. We were trying to process all the information we had been given but still thinking this could not be happening to us. My husband and I had said several times in our marriage that if we ever had a special needs child, we would handle it bravely and have the utmost confidence that God would take care of us. But here it was, the situation was not "what if"-it was real. We looked for things to give us encouragement. A good friend had let us borrow some scales. I would weigh China every day, hoping for any weight gain at all.
Days and weeks would go by and only an ounce or two of weight gain would be seen. Finally, I gave the scales back, too discouraged to even care. At six months of age she weighed 8 pounds. The baby books which I had used so many times for my other two children were useless. All they did was remind me of the normal little girl I did not have. During China’s first year of life, she was seen by numerous specialists.
Seizures began to occur at 4 months of age and surgery was performed at 9 months of age to correct a kidney disorder. At the time of the surgery, she weighed 9 lbs. and 9 ozs. At 4 months of age, early intervention specialists began a program for her that included weekly physical and occupational therapy. My life had changed drastically. When people weren’t coming into my home for therapy, I was on the road going to doctor’s appointments or keeping up with the stacks of paperwork from all the services we would need in the future.
Three years later, as I’m writing this, it’s unbelievable to think of all China and our family has been through. We were able to find a nation-wide support group specifically for Wolf-Hirschhorn Syndrome. They have been a tremendous help in showing us that we are not alone and that people with WHS are able to do far more than doctors have previously thought possible. Our family and friends are also a great source of encouragement and our church family continues to support us in many ways. Our lives are still extremely busy with weekly therapy sessions and exercises to help her do the simplest of tasks. We have rejoiced over the smallest achievements, secretly cried over the disappointments, and have done our best to include and treat her as any other child. Today, although she is still very small (13 lbs. ) she can sit independently, is learning to feed herself, and can manipulate some basic toys. She loves music, loves to watch people, and especially loves to play with her brothers. She attends a public pre-school program and is fully included in all pre-school classes at our church. She has been given a "clean bill of health” regarding her kidneys and eyes. Many of the problems we were told that she might have, have not occurred and we are extremely thankful for that.
China has forever changed our lives and it’s our hope that our story will change the lives of other people as well.
China in pictures...