Happy 19th birthday to our sweet Shae.Looking through our past blogs I was surprised to note there wasn’t a story about Shae and her birth. I love telling this one. It’s a long one but so worth it.
Kourtney’s condition is genetic. That does not mean there is a family history of the disease but that Todd and myself both carry a recessive gene. Alone the gene doesn’t cause any issues, but together, recessive genes can cause numerous genetic disorders including cystic fibrosis and in our case Epidermolysis Bullosa Recessive Dystrophic or RDEB. It’s amazing that one small gene called collagen 7 can cause such significant problems.
The risk for Todd and I to have another child with EB was 1/4. Although the odds were in our favour we were undecided if we would even have more children. This was difficult for me to even comprehend as I always saw myself with a quiver full of children. Did we want to risk having another child with EB?
We saw Kourtney suffering with EB but we noticed she was so social and talked from the time she woke up to the time she went to bed. It was an obvious choice that she needed a sibling. Todd and I both decided that even if her sibling would have EB that Kourtney would not be lonely and isolated.
Conceiving was never an issue for us. I was on the pill when I got pregnant with Kourtney. So once we decided to pull the goalie (and the back up one) . . . we were expecting!! Dealing with the first semester nausea was difficult enough never mind the bureaucratic nightmare that ensued when we simply requested chorionic villi sampling (CVS) to determine if our baby would have EB. Because we were adamant about not aborting our baby, the doctors at BC women’s genetic lab refused to test us. This started a chain of letter writing that clearly stated that it was important for us to be prepared. This process alone took over a month (19 years ago we didn’t even own a computer).
Unfortunately, by the time the approval process went through I was too far along in my pregnancy to have CVS done. This meant I would need an amino done instead which came with more complications. Todd and I felt strongly we needed to have an amino as it would impact where we would deliver our baby, prepare us and have an army of people praying for us. At 14 weeks we had the amino done.
The doctor doing the amino was so so kind. When we requested an ultrasound pictures of our baby and she was so happy to give them to us. She said most people don’t want them because they are planning to abort based on the results. I don’t remember much more about that procedure except being left on the bed all by myself. Everyone else was gathered around Todd examining the kidney stone he passed into a coffee filter. That was the easy part however the hardest part was waiting for the results.
2 weeks later I was laying down with Kourtney when my Motorola sized cellphone went off. I will never forget the nutcracker ring tone as I picked up the phone. It was the genetic doctor. In her broken English she told me the fetus’s DNA matched Kourtney’s to a tee. Our fetus would have the same condition as Kourtney. We had a decision to make. All I remember is feeling the movements of my 16 week old baby and saying, “There is no decision. I will not have an abortion.” She went on to say she did not agree with my decision and I told her it that it did not matter if she agreed or not.
I felt such a pit of despair right away but my older sister Gaylene said to me “God is sovereign and doesn’t make mistakes.” Those words carried us through the pregnancy and to this day resonates with our family when we are faced with difficult challenges.
I continued to have my prenatal appointments at BC women’s hospital. Eventually I put a stop to those when I drove into Vancouver with a full bladder for an ultrasound, got stuck in traffic, and peed my pants. When I arrived at the ultrasound I was told my bladder was too full and needed to let some out. After the ultrasound I saw the most uncaring and unkind doctor. I tried to lighten the situation by telling her about my incontinence and she failed to see the humour in it. I decided after that I was not going to have my baby there. I needed a community to support and pray for us, family close by and people who knew us.
Thankfully we have amazing team in Abbotsford that agreed for me to deliver in Abbotsford hospital. Dr Driedger and Dr Anquist will always be the men wearing superhero capes in Shaelyn's birth story. Children’s hospital was not happy with my decision and was concerned about my fetus well being. Which was a bit ironic considering that at 16 weeks they thought abortion was the only option. (At one of Kourtney’s appointments Todd was in the bathroom at children’s hospital. He overheard our dermatologist speaking with a resident telling them that she did not agree with our decisionnot to abort. It made him physically ill and was not able to share their conversation with me until a few years later.) It was a satisfying moment when I told the uncaring and unkind OBGYN that I wasn’t delivering at BC women’s.
Kourtney’s fun little personality kept me going throughout the rest of the pregnancy. We had so many people praying for us we felt so carried throughout it all. Even a well meaning couple encouraged me to take one of their products that would change the DNA code of my baby. Thankfully I didn’t as my mom said, “ If your baby comes out healed we want to give the glory to Jesus not to the company.”
There were some sweet moments during my pregnancy. During one of Kourtney’s dressing changes we read a bible story to her about a man who was healed of Leprosy. His name was Naimen. Kourtney was so interested in the story as we related it to her skin condition. Todd and I decided if we were to have a boy we would name him Naimen. This in no means meant we were expecting God to completely heal our baby but somehow it gave us peace. We were realistic and knew the amino carried a 100% accuracy rate. We were prepared and ready to receive another glorious gift of a child with EB into our family.
At 38 weeks I was to be induced. March 8 the was my scheduled induction date. But there was no room at MSA inn that day. On March 9 th I was doing Kourtney’s dressings and got a call to come in. Todd came home from work and we went in together. Dr Cindy Shaw was the Doctor on. She broke my water and gulped when she saw meconium in the amniotic fluid. This was an issue because all babies with meconium were suctioned before they took their first breath so they wouldn’t breathe in the meconium. Because EB affects the mucous membranes, suctioning her mouth could cause blisters in turn causing airway obstruction.Yikes. But while I was waiting for my labour to kick in, two men came into our room to this day I still am not sure who they are (they were actual people but I never met them). They said they heard someone needed prayer and they came in and prayed for all of us and prayed for a miracle.
I got started on oxytocin and my labour progressed quickly. I went from 2- 10 cm in 10 minutes and started pushing. Dr Shaw was calm and started singing a song on the radio. I wanted to scream at her (well I actually did). My irritation worked in my favour as I pushed Shaelyn out in about 10 minutes. The thick meconium was suctioned and she came out screaming. Todd was the first one to see it was a “Shaelyn”. The cord was cut, she was taken to the warmer, I was almost hanging out of my bed trying to take a closer look. No signs of EB! The paediatrician said after his examination, "You must believe in God, there are no signs of EB." There was nothing but tears of joy and praising God in the moments that followed. I was a bit more sceptical as I looked her over with my trained EB eye. It took many days before I was totally convinced. 19 years later I am still in awe of her and the gift that Shaelyn is not just to our family but to so many people (Shaelyn's name means gift).
We did follow up DNA tests and they were compared to the amino results and they were different. She is documented as a medical miracle. We decided that we would handle the dermatologist, the ob gyn and the genetic doctor with grace. We wrote letters to them with a picture of our very healthy baby girl. It was a beautiful time in our lives. God is always with us but revealed his power to us in a way that not many people have experienced. Winning a lottery would have never felt that good.
Although we have never experienced the big miracle for Kourtney there have been many amazing events along the way to makes us feel God's presence in her life. It doesn’t always help with heartache we feel when she is going through a rough time. But knowing God intervened in such a miraculous way reassures us that God is sovereign and doesn’t make mistakes.
Shaelyn’s birth story is one many will never forget. She has blessed us in so many ways. We are looking forward to see what this year of being an adult brings for her!
We love you Shae! Happy 19th!
