Featured Child~ Seth

This is Seth's story. Let me take you back to March 2, 2010. Our youngest daughter's first birthday. I could no longer ignore the signs, and took a home pregnancy test. When it was positive, I have to admit, that both my husband and I felt an immense amount of apprehension. We had two children already, a 2 1/2 year old girl, and a 1 year old girl. Both who had their own issues and concerns. Once I did the math, I was even more concerned. This would be 3 children in just over 3 years. How, as a mom, was I going to handle it? It took me many weeks to get excited. I finally started buying baby clothes, in hope that it would help me build my excitement. It worked, by 12 weeks, I simply couldn't wait to see our baby. When I went for my 12 week neonatal appointment, my Doctor couldn't find the baby's heartbeat, so he sent me to get an ultrasound done, to make sure everything was ok. The ultrasound tech found baby's heartbeat and sent me on my way.

At 16 weeks, I had an ultrasound done on my ovaries due to ongoing pain was I was having. They quickly checked baby, and let me see, but it was too early for the measurements. I missed the next ultrasound since my regular Doctor was on 6 weeks of holidays, and didn't get back until I was 23 weeks. Our youngest daughter had an appointment with genetics at BC Children's hospital that summer, so when I was about 6 months pregnant, we drove the 1600km to Vancouver. While we had our meeting with genetics, the Doctor suggested that I get an ultrasound done, to rule out my daughters condition. So we scheduled an appointment for the next morning. That afternoon, we had a 3d ultrasound done, to see our baby, and find out the sex. We discovered that we were having a boy! We were so excited. We got up the next morning, July 16, 2010, and went in for our ultrasound. We honestly didn't suspect anything was wrong, until the Doctor told us there was, because we were there specifically for an in depth diagnostic ultrasound. When the doctor came in, and said that there was something wrong, a buzzing started in my ears. I was having a hard time processing what he was saying. There were too many facts and statistics that he was telling us. Trying to lighten to mood, he asked what we did "When we weren't sitting there trying to pretend we weren't upset" that’s when the buzzing stopped, and I started understanding. My perfect baby, was sick. Very sick. We were given the statistics for BC Children’s/Women’s hospital, which was 80% chance of survival if we ruled out chromosomal abnormalities.

We were scheduled to leave Vancouver the next day, but we had to delay our departure for an appointment on Monday for an amniocentesis which, though a difficult decision, we decided was best. We also had a non stress test, and an appointment with MFM (maternal/fetal medicine) since I would have to deliver at BC Children’s/Woman’s hospital. Then a fetal echocardiogram on Tuesday. We could leave Wednesday after the initial results from the amniocentesis came back. The amniocentesis came back showing that his chromosomes were 'normal' and he was definitely male. They told me that they would email me when we had to be back to wait for the baby to come. We left, feeling like the ground had been ripped out from under our feet. Our girls now said routinely "Is Mommy sad?"

When we got home, we started fundraising. We decided that since the girls were so young, that they would come with me, and that my mom would take a leave of absence from work, to help me. My husband would stay back until just before baby came, and then he would fly down for 2 weeks before going back to work. This meant that we needed to raise enough money to cover my mom's wages, and extra living costs. It was hard to talk about. Every time I thought about my baby I started crying. After the first couple of weeks back at home, I got upset, I said to myself, and my son "We will get through this! You WILL be fine! You will be strong and stubborn and fight, because there is no other option!" I refused to allow myself to even think about the statistics. We were scheduled for our first round of appointments on September 22, 2010. So we left on September 20 (4 days before our oldest daughters 3 birthday). After 2 days of travelling we got to the Easter Seal house in Vancouver. We started to settle into our small room. Our prenatal appointments were every week. I would have an ultrasound, a non stress test, and then MFM. Each appointment was also followed by blood work, since my blood pressure was high every time I had an appointment. I met with a Neonatologists, to better understand what would happen once the baby was born. When I wasn't at the hospital for that one day a week, we just tried to stay busy. We played tourists right up till I had the baby. I was scheduled for a c-section, due to 2 previous, for October 20. My husband was scheduled to fly in on October 15, to give the girls a couple of days to get used to Daddy again, and to prepare them for Mommy being in the hospital. On October 6, I had a set of appointments, I would be 37 weeks the next day. I was anxious hitting this milestone, since I had gone into labor with our youngest daughter at 37 weeks. I got everyone to do an extra thorough check. I had the doctor check my cervix. Every one said that they were pretty sure that I would make it to the scheduled c-section. Thinking that I had covered my bases, we took the girls swimming. That evening, I was tired, so I told my mom that I was going to go to bed early. I climbed into bed at about 7:50 that evening, and I jumped back out just before 8pm when my water broke. I cannot even explain the panic that set in. I knew that my husband was going to miss the birth, and that terrified me. I didn't know if I would have a baby the next day. I was nearly hysterical. My husband got to arranging an early flight. My mom called my cousin to come and stay with the girls. I got to the hospital, and they hooked me up to all the monitors. Seth was born at 1:32 am October 7, 2010 exactly 3 weeks before his due date. He gave 2 week cries before they intubated him.

After I was released from recovery, I was taken to a room. They told me that someone would come and get me, when I was allowed to see Seth. I laid there, trying to sleep, but every time someone walked the halls I jolted awake, hoping it was someone coming to take me to see him. At 7:30 I finally called the NICU, and the nurse told me to give them a half hour for shift change, and to come on down. Just as I was getting out of bed, and into a wheelchair, my husband walked in so we both went to see our son. It was difficult to see him, he was fighting the respirator. We stayed for about half an hour, before I had to go back to my room for breakfast and a rest. When we went to see him again, they had given him a drug to paralyze his muscles, so that he couldn't fight the respirator anymore. His blood pressure was low, so they gave him a medication to help with that. They were also doing the first of many echocardiograms on his heart. The Doctors were quite concerned about the pulmonary hypertension that he was struggling with. After they took him off the drug that was keeping him paralyzed, they kept him sedated with another. They were also trying a few different ways to help decrease the hypertension. By day 9 (October 15, the day Daddy was supposed to arrive), they felt that he had stabilized enough for surgery. We went and saw him in the morning. They had shaved half his head, and inserted a PICC line. We talked to him, and the Doctors. We then watched them wheel him away. They told us that they would have him for about 4 hours. 8 hours later, they brought him back. They had repaired the CDH with a Gortex patch about the size of a Canadian toonie. During his surgery, they discovered that he had his bowels, part of his kidney, part of his spleen, and part of his liver all in his chest cavity. His post surgery x-ray showed that he had about 1/4 lung on the left side, and about 3/4 lung on the right. He was kept sedated for a few days, but he wasn't receiving any addition oxygen. He was on 'room air'. He continued to improve. He was moved out of his private room, into the nursery where he received 2/1 care by a nurse. He was extubated on day 14 (October 20, the day of his scheduled c-section) and my husband heard him cry for the first time. He did not receive any oxygen. He had his first meal of 3 ml's of breast milk the next day. We were moved again, to a nursery where he received 3/1 care after an echocardiogram showed that his hypertension had resolved itself. He continued improving. His PICC line failed and was removed. IV's were inserted for his medication. We got to full feeds by NG tube on October 31. He drank his first full bottle a few days later. He was completely off all medications on November 7. We were discharged on day 42(November 17). He was exactly 6 weeks old. The Doctors and nurses in the NICU were completely floored by his case. The early days they were talking about ECMO, and then he was discharged at 6 weeks with no oxygen, no medications, no feeding problems, no reflux.

Seth is a true miracle. He is now nearly 9 months old and he is showing no delays or developmental concerns. He is just a normal healthy boy with an incredible story! We saw genetics again, for Seth, and they wanted to get the complete picture of his chromosomes. I only got the results back yesterday. They had found a small duplication on the long arm of chromosome 20. Now we have to see if my husband or I have the same duplication. If neither of us do, then this may be the cause of his CDH.

I have to say that the hardest part for me, was feeling like I had to choose between my girls and my son, and watching them all struggle. Seth with his health, and the girls with the whole experience. We still have monthly Doctor’s appointments, and we are still careful not to be around people who are sick, but we are beginning to just live a normal life again. CDH has changed MY life forever! I hope that it doesn't change my children's.

~Jess- Seth’s Mommy