2020 Team 18 - Team Gideon

 

 I was 22 when I found out I was pregnant. My husband (Wyatt) and I were excited but nervous since we were so young. I had my doctor's appointment and she recommended that I do a genetic testing at 11 weeks saying that it's just an option and it is unlikely anything would come up. I decided that I would do it since I wasn't worried, and I wanted to do everything possible to make sure the pregnancy was good.
On March 31 Wyatt came to visit for the weekend since he was posted to the base Gagetown in New Brunswick and so I surprised him by taking him to Niagara Falls to have an ultrasound done to find out the gender early, it was a boy. On the drive home I got the call from the genetic department in North York that the test came back positive and we needed to set up an appointment. I don't remember much of that conversation since I was in pure shock that this was even happening. All I remember are the words "potentially down syndrome". He flew home two days later on Easter Monday. On the Tuesday I had the first Genetic counselling meeting and was told our child had a 1:2 chance of Down Syndrome. That night while driving home to Base Borden on the highway I was in a car accident. I attempted to change lanes, drove over black ice, and swerved into the guard rail twice. The car came to a stop and I watched cars coming at me so I quickly drove off the road then called Wyatt. I then called me mom and luckily a tow truck pulled over to help me. My mom came and picked me up and took me to the hospital where the baby and I were all cleared.
Wyatt was posted to Borden on the 6th and things seemed less bleak. After that initial genetics meeting things started moving very fast. On the 12th I had an amniocentesis done and on the 13th they confirmed that it wasn't in fact Down Syndrome. From there we had to book a fetal echocardiogram to see if there was a heart defect that caused the genetic testing to be positive. On the 24th it was confirmed he did in fact have 4 major heart defects, but we were optimistic that we could get him surgery and he would be okay.
We made another genetics appointment for May 3rd with an anatomy scan to look for physical defects. They made us also make a Sick Kids appointment to do a second echocardiogram and meet with a team that would help with his care after birth.
While getting the echocardiogram we received the call about the anatomy scan. They told us that he had multiple defects including having only two fingers on both hands, missing both ulna bones, having shortened humerus bones, two enlarged brain ventricles, an enlarged bladder, underdeveloped urethra, and cysts in his kidneys. We left the echocardiogram and went right to meeting with the fetal cardiologist who stated right as he walked in that he had planned on coming in with one set of information but after hearing his anatomy scan results, had to change that entire set of information. We were told that Gideon would need surgery for his heart but because of all his physical deformities he more than likely wouldn't survive the surgery he needed. He stated that surgery is very hard on a baby's body and when you factor in other complications it hinders the success rate of the surgery. We went straight from Sick Kids back to the genetic counselor who informed us that we had a choice to make. We either could continue the pregnancy, do the surgeries, and assume the risk or be induced and deliver him now.
We had one day to decide since we had to have him born before I was officially 20 weeks since the standards stated that once I was 20 weeks he would be considered a still birth and we would be required to pay for a cremation and burial. That Thursday I was induced and at 1:48am we met our son, Gideon Eugene Wade Van Den Elzen - Grunow. We both gave him a middle name of a strong male in our family and we gave him both our last names.
The birth was not a pleasant experience since the staff gave very little emotional support but once we had our son in our hands that all faded. We got lots of photos with him and my mom made a gown for him out of my first communion dress. The priest came with our genetic counselor to do a naming ceremony for him and we were given his footprints. We said our final goodbyes and I sang him the lullaby "You are my Sunshine". It was the hardest goodbye Wyatt and I ever experienced, and we wouldn't wish that feeling on any parent. But we were grateful to have been given the chance to hold him, get photo, and get his footprints since not many people are as lucky.
Tissue samples were taken from him to do a full exome sequencing test (the genetic counselor got a bursary to have it paid in full for us) and we were able to find out that he had Cornelia De Lang Syndrome. He was cremated and we were given the remains and he to this day remains in our home with us. We were grateful to have the closure of knowing that what had happened with him was a one off and that the chances of it happening again we're about 1%.
We now have a 9-month-old daughter that we love dearly and are thankful for everyday.

 
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