Dear Mr. Sparks,
I became pregnant with my first child in winter of 1995. What a wonderful time it was (at least for the first 6 months). My husband and I had been married for five years and couldn't wait to start our family. We had our first ultrasound at 20 weeks and everything seemed fine. We were told we were having a boy and immediately named him Anthony Urban. My husband's name is Anthony, and my late father-in-law's name was Urban. It was perfect. Everything seemed to be going along normally for the first 6 months of my pregnancy. I was enjoying the attention I was getting and loved being pregnant. I was working full-time as an administrative assistant for a large steel company in Cleveland. Life was good!
One day at work I went into the bathroom (as we all do several times a day during pregnancy) and noticed some spotting in my underpants. I immediately called my doctor, and she wanted to see me right away. I wasn't too worried at that point, but I cleaned off my desk because I had a feeling I might not be going back to work for a while. When I got to the doctor's office, she gave me an exam and said she thought I had a clot on my cervix, but that I needed to go to the hospital for more tests. I called my husband from the doctor's office and broke down crying. I couldn't believe something was going wrong with my pregnancy. This wasn't supposed to be happening. My husband met me at home and we headed to the hospital. When we got there, we went to the labor and delivery floor, and they immediately hooked me up to a fetal monitor. The baby's heartbeat was strong and steady. I was starving, but they wouldn't give me anything to eat. After several hours there, they said I would need to spend the night and have an ultrasound the next day. After I got checked into my room, my husband left, and we had a tearful goodbye.
The next morning my husband came back to the hospital, and we went for our ultrasound. It seemed to take forever. The technician really took her time. She did have a strange look on her face. She left the room and went to get a pediatric cardiologist. We were so scared. Could something be wrong with our little Anthony? He came in and continued the ultrasound. Afterward he told me to get cleaned up and that he wanted to talk to me and my husband in a private room. After he left the room, I lost it. I knew it was very bad news. He explained to us that our son had a hole in his diaphragm. He said it appeared to be a small defect, but that it would require surgery as soon as possible after he was born. We were in shock! I wouldn't be bringing my baby home with me. That wasn't right. What did I do wrong?
I got back to my hospital room and broke the news to my mom and dad. They were devastated. Then my mom began to call relatives to let them know what was going on. During all of this, everyone seemed to forget about the spotting I had. The next day, my ob came in and said I could go home. I was so happy. I just wanted to go home. A few minutes later, she came back and said I wasn't going anywhere. I had placenta previa. My placenta was blocking my cervix and causing the bleeding. This condition would require strict bedrest and regular ultrasounds to see if it would improve. I had my husband go home and pack me a bag of clothes and personal items I would need.
I spent 7 weeks in the hospital on very strict bedrest. I had several bleeding episodes and got more scared with each one. I was told it was critical that I keep this baby inside of me as long as possible to increase his chance of survival. A pediatric surgeon met with us as well as a neonatologist. They both explained to me what would be happening once Anthony was born. He would have quite an uphill battle and so would we.
On March 10, 1996, my OB performed an emergency C-section on me. I was 36 weeks pregnant, and the bleeding had gotten worse. If they didn't do it now, both mine and my baby's life would be in danger. Anthony was actually born at 12:01 am on March 11, 1996. He weighed 7 lbs, 4 oz. Quite big for only 36 weeks! He already had size on his side. They whisked him away to the NICU, and I didn't see or hear him. By the time they got me sewn up and to the recovery room, I was exhausted. My family members came in to see me, but I made them all go home. It had been a long night, and there was nothing they could do. I spent 14 hours in recovery with excessive bleeding and had to receive 2 units of blood. My body was traumatized and so was my mind.
Anthony had his first surgery at 1 day old. The surgery itself went well, but the defect was much worse than they thought. He had virtually no diaphragm on his right side. Luckily his liver had prevented other organs from going into his chest, and he had a full lung on the left side and a half lung on the right. That was a lot more lung tissue the doctors would have predicted for such a large defect. This was great news. His first night post-op was very rough. The next morning the doctors began talking about ECMO. But a wonderful NICU neonatologist was patient. She said Anthony needed some time to recover from a very invasive surgery. She was right.
Eventually after a few weeks, Anthony was able to wean down on his ventilator. He did spend some time on the oscillator and nitric oxide. The oscillator really helped him. He spent 6 weeks in the NICU. He had a lot of trouble coming off the vent. Every time they tried, it would last a few hours and then his stats would drop. It was so frustrating. I remember one time when they tried; I was holding him, and I didn't want to let go. I didn't even realize that he was turning blue in my arms. It was as if he and I were the only two people in the world, and I couldn't hear the nurses trying to tell me he needed to go back on the vent. I guess I really didn't want to hear that.
After 7 weeks in the hospital, we brought Anthony home. Everything seemed to be great. I did begin to notice that he was turning quite blue when he cried and that he wasn't putting on any weight. We brought him for a checkup on July 31, 1996, with the surgeon and were informed that his hernia was back. They performed surgery on him that day and the roller coaster ride started again. This time he tolerated the repair very well. By the way, they inserted a Gortex patch inside his chest. I forgot to mention that earlier.
It was a few days after the surgery while he was in the PICU that I noticed a lump on his abdomen. It turned out to be a bowel obstruction and once again he needed to go under the knife. This time Anthony had a very rough time. It had only been a few days since the re-repair and his body didn't like being opened up again. He was bleeding very badly from his abdominal wound. This was the first time I saw a worried look in his surgeon's face. My husband and I prayed and prayed and prayed. We called our friends and family and asked that they start a prayer chain for our son. At the end of the day we went home with heavy hearts. That night we got a call at 4:00 am from the nurse, telling us that we should get to the hospital because they couldn't stop the bleeding. We rushed down there, and I sat by my son's bedside. I sang to him and read to him. My husband went to visit his father's gravesite and then to church. When he came back, Anthony began to make a turnaround. By the end of the day, Anthony's bleeding stopped. It was truly a miracle.
As a result of the surgery, Anthony had a colostomy for a few months. The doctor wanted to give his bowel some time to rest. We brought Anthony home in mid-August once again. This time he was great. No turning blue. He had his colostomy reversed in October and was home in 2 days. What a difference!
We just celebrated Anthony's 6th birthday last week. I can't believe it. He still sees his surgeon twice a year and gets an annual MRI to check his chest wall measurements. They think that at some point in the future he will need another surgery to replace the Gortex patch with a larger one. I try not to think about that too much, though. I just enjoy every minute I spend with him. He is in kindergarten and is thriving. He plays on the soccer and baseball teams in our town. I only dreamed of these days 6 years ago and now they're my reality. We also have a beautiful 4 1/2 year old daughter. I got pregnant with her when Anthony was only 9 months old. We really didn't plan it that way, and I was scared to death that something might be wrong with her, too. But she was born perfectly healthy. I'm glad I had her so soon after Anthony. It really helped me heal to know that we could have a healthy child and that I didn't do anything wrong.
God bless each and every one of you. We are all part of a family. We share a bond that can never be broken.
Written by Anthony's mom, Mary Iacobucci (Ohio)