The Saga Continues

As the months of pregnancy counted down, we went to many more Fetal Assessment appointments. The baby was growing well. The heart showed signs of compression, but the blood flow was still in the right direction and the four chambers where all working. We knew our baby would have a strong heart to fight for survival after birth.

We had many good signs that our Madelyn would have a fighting chance. The lung-head ratio (LHR) at 26 weeks was 1.3. This measures the volume of the right lung and is then divided by the circumference of the head. Studies show that babies with a LHR of over 1.0 usually survive, and babies with a LHR over 1.4 always survive. The OB told me not to count on that, but I wanted to hang on to every good fact I could find.

I had a Fetal MRI done on July 2nd. The results got sent to my family doctor (whom I worked for) and I got to see them before the Fetal Assessment team could tell me. We had been praying and asking others to pray that it would show no liver in the chest cavity. As the liver is a denser organ it would compress even more lung tissue, and the chances of survival is even graver. The MRI showed the chest was completely filled with bowel (intestine) loops, and the stomach. The liver was below the diaphragm,(praise the Lord) and the spleen was expected to be in the chest cavity as well, since it could not be identified anywhere else. Our regular appointment gave us the opportunity to see our baby on a regular basis; we always came away with great pictures that I loved to show off to anyone who asked about my baby.

Carl and I held on to a piece of scripture from Psalm 139.
“ For you created my innermost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made: Your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.”

As the weeks ticked by I focused on enjoying my pregnancy. We met the paediatric surgeon that would be doing surgery. Dr. Wiseman (truly a wise-man) was very good at answering all of our questions. The Children’s Hospital in Winnipeg does not have ECMO (a heart-lung by-pass machine) very commonly used in the US for CDH babies. He simply stated that it was not really helpful and that the respiratory team at HSC were top notch. Dr. Shesa, the Neonatologist that met with us during one of our appointments said that we could be referred to Edmonton if we would like to have ECMO for standby. Carl and I discussed and prayed about it and felt that having our baby here in Winnipeg was going to be fine, and whatever happened, happened, and would be God’s will.

First of many appointments at Fetal Assessment.

We had to wait a week for our Fetal Assessment appointment at the Women’s Hospital in Winnipeg. I was anxious for the appointment. I was hoping and praying that perhaps the ultrasound had been wrong, or that God and healed my baby. But this was not the case. After meeting with the Geneticist about this deformity we were told that it wasn’t anything that Carl and I did, or that we carried a gene to cause the defect. We of course were offered to terminate the pregnancy, and try for another healthy baby. The chance of having another CDH baby was only 2%. Terminating, of course was not an option for me. (Termination of a pregnancy is another story and I choose not to discuss at this time.) I had the amazing support of my husband, and if there was even a 1% chance my baby would survive I had to give it that chance.

The Fetal Assessment Unit at the Women’s hospital is amazing. They are very busy, yet always professional, with a feeling of caring. Now the waiting room at the Women’s Hospital is another story all together. Now you have to understand that in the province of Manitoba where we have universal healthcare for all, all are treated as equal. So everyone and I mean everyone that has any risk in their pregnancy is sent to this unit. This includes every woman with possible complications affecting the baby. For example, gestational diabetes, over the age of 35 years, high blood pressure, and as in our case a question about development, it also includes mothers addicted to drugs and alcohol and the lifestyle that brings with them. So needless to say, sitting in the waiting room opens my very secluded world of small town living.

Our nurse stenographer was the best, her name was Marie. She let us see our baby in 3D for the first time. She explained everything to us. Dr. Mytopher was the first OB that I saw and it was her duty to explain to us that the hernia was severe and that many babies do survive, but there are many that don’t. After we expressed again that we would go forward with the pregnancy she stressed that it would be a long journey.

I asked for more information on CDH since the only real information that I had was from reading other blogs and finding medical journals on the internet. Marie was kind enough to photocopy a chapter out of a medical textbook. This information was very black and white and gave the mortality rate at about 50%. The Children’s Hospital in Winnipeg has about a 70 % survival rate for CDH babies. The problem is that there is no way for medical professionals to tell you where your baby will fall. We would continue to be seen at Fetal Assessment and they would monitor the growth of our baby. We were promised that they would be up front about anything they found. Marie also gave me her direct phone number at the unit and told me to call anytime I had any questions. She also told me that is was important that I stay positive, because right now, while my baby was still in utero, it was fine.

With this new information, Carl and I went home. My parents came over the talk about the appointment and just to be supportive. I confided in my mother that I felt defeated and had no desire to fight for this baby. We prayed together and she told me to not despair, to keep my chin up and gave me a bible verse. “Those who wait on the Lord shall renew their strength.” Isaiah 40:31 She reminded me that God had sent this baby to us.

God has a plan for you...

My first blog to the world about our adventure with CHD. Carl and I had been trying for many years to have a baby. In the midst of our sadness and despair, I found out I was pregnant on January 7, 2008. I had my first ultrasound at the Heartland Fertility Clinic in Winnipeg on January 29, 2008 because I was impatient and very nervous about this pregnancy. I had waited so long to be pregnant and now that I was, I could not shake this feeling of nervousness, I was so afraid of miscarriage. Dr. K, had really good advice for me. He told me to allow myself to feel the feelings that are required at the moment. In other words, it was okay for me to allow myself to be happy and excited. If something was going to go wrong, feel sad at that time. On that very cold winter morning Carl and I ventured to Winnipeg to see our baby for the first time. And there was the baby on the black and white screen. I almost cried right there on the exam table. The baby’s heart was beating; I could see the pixel on the screen flashing back and forth. At that moment it became real to me that we would have a baby and become parents!

We waited to tell family and friends until the usual "safe" period. I was 14 weeks. Everyone was so happy and excited for us. I really enjoyed telling people that we would soon have a family of our own.

On April 28th I was scheduled for a routine ultrasound at Boundary Trails Health Centre. I was really excited to see my baby again. I was 20 weeks along and starting to show my pregnancy belly. I had a fleeting thought that morning in the shower that there might be something wrong with our baby, but I sent up a silent prayer to God to give me peace and I also thought that we had already had our battle with infertility how could something else go wrong. Besides, I had already been feeling the baby move since 15 weeks, all had to safe and sound. I continued to get ready for work and just as I was walking out the door, it was as if God stopped me right there, and spoke directly to me. All that He said was, "God has a plan."

A few hours later that day, the radiologist Dr. Mary Jacob, said three words that will never leave our lives. Our baby had a congenital diaphragmatic hernia. I was going to be sent to the Fetal Assessment Unit in Winnipeg and they would assess further.

I work as a billing clerk at the clinic where my family doctor works. So, Carl, and I in our daze and bewilderment rush back to see what she had to say. As we walked in the door, her nurse saw us coming down the hall and ushered us into an exam room immediately. There Dr. H, explained to us that I would be delivering our baby at the Women’s Hospital High Risk Delivery ward. The baby had a hernia on the left side, allowing the stomach up into the chest cavity; pushing the heart to the right side and preventing the lungs from developing. Dr. H had never had a patient with this defect before and could not really offer advice on survival rates. I just sat there with Carl, his arm around me and my world came crashing down.