Our journey started July of 2020. I was 13 weeks pregnant and went In for my monthly appointment with my OBGYN. She couldn’t find a heartbeat and sent me for an ultrasound although she told me she wasn’t to worried as her Doppler was ancient. However, it wasn’t just her Doppler, there was no heartbeat. Options were given to me and I decided a D&C would be the best option.
Everything went smoothly and she told us we could start trying again after my next menstrual cycle. So come September, we started trying. And in January, I found out we were expecting again, with our second rainbow baby! We were elated. It had been a long 6 months overcoming the last loss and we couldn’t wait for October!
Mid-February I went for my dating ultrasound where they said that it looked like it was a low laying placenta but I was early (before 7 weeks) so it wasn’t accurate and wanted to scan me again in a couple weeks.
March 16th 2021. The day where we once again learned that this baby was not going to ever make it earth side. They diagnosed me with c-section scar ectopic pregnancy. Society mostly associates ectopic pregnancies with the Fallopian tubes. However, ectopic actually means that the embryo has implanted anywhere where it is not viable. My c-section scar became that place.
Ectopic pregnancies happen in 1 in 50 pregnancies. Of that 0.02%, c-section scar ectopics happen 1 in 2500. This condition was life and death for me, and we had to get to Edmonton ASAP. There was a very high chance of having my uterus rupture. No one knew that I was pregnant and so it was quite a bomb for our loved ones. We headed to Edmonton and met with the team. The next day they confirmed what the radiologist saw in Grande Prairie and a plan was made. To terminate the pregnancy.
This was going to be the safest way for me to survive. To keep my uterus and be able to try again. My husbands heart broke, mine shattered. Another loss. Except this time it was different. We had to make the choice to end it. In reality, it wasn’t a hard decision, but at the same time it was the hardest decision I have ever had to make.
I knew deep down that if we didn’t I would have died. But a small part of me will always wonder “what if”. “What if they read it wrong” “what If I didn’t rupture” “what if my baby would have been okay” “what if”. It has been a long year, with two major losses, a surgery, and endless days of wishing I was getting to feel my baby kick and move. But, this is my journey and I know I will get through it!
Child born with Disability
When I was 20 weeks pregnant we had our anatomy scan in grande prairie. We got a life changing call the next day. Our doctor wanted to see us as soon as we could get in to see her.
There was concerns about our baby and that she may have clubfeet. She wanted to be sure so we were booked in Edmonton for an ultrasound. It was a couple weeks away but it felt like months. Finally the day came. We had our ultrasound and the neonatologist came in and confirmed the diagnosis.
Lots of research was done on treatment and everything else we could imagine. Our baby was born at 37 weeks via emergency c-section and that is where our journey really began. On top of being born with clubfoot she was breech for the majority of my pregnancy which also left her with hip dysplasia and the inability to bend her knees.
She was literally folded in half for the first month of life. She started treatment for her clubfoot at 3 days old in the NICU. She was also fitted for a brace to help with hip dysplasia but that didn’t seem to work for her and her surgeon was happy that her hips would remain in the right spot without it.
Every week for 8 weeks we headed to town for our cast changes. We also went in for her interdisciplinary team appointments. You name them, they were involved. PT, OT, RD, and SLP (she was a lazy eater and wasn’t gaining weight) played vital roles in her development.
At 8 weeks the surgeon lengthened her Achilles’ tendon by performing a tenotomy. She was young enough that she didn’t need any anesthetic and the doctor could do the procedure in outpatients.
She was casted for 2 weeks and fitted for her first brace think of a snowboard that she wore for 23 hours a day. At about 7 months old, PT was concerned with relapse which is common in clubfoot and wanted us to see the clubfoot team at the Stollery children’s Hospital.
We made the 5 hour journey down to find out that the tenotomy had failed and she would need it done again. But, because she was that much older they had to use anesthesia this time. Back down to Edmonton a couple weeks later for her surgery. She did amazing and was casted again and sent home later that day.
We got home on a Friday and by Sunday she had kicked her casts off enough that we had to travel back down to Edmonton to be re-casted. Home again and two days later she had kicked them off AGAIN! So back to Edmonton for the third time in a week.
A week later and once she healed from surgery we were fitted for her ponsetti braces (similar to her first brace) in Edmonton. Two weeks after that we headed back to Edmonton to have a follow up on the braces. She had to wear them for 23 hours a day at the beginning and with direction from her team we were able to decrease wear time until it was just when she slept.
Every 3 months we headed to Edmonton for her 5 minute appointment with the team. At 2 years old her team and I were concerned that she wasn’t close to walking (even though her specialists didn’t seem concerned at all) we headed back to Edmonton and another doctors said she would need to wear AFO’s. After she was fitted for those she started walking almost immediately.
She no longer has to wear her AFO’s at night but is still wearing the ponsetti brace in place of it. This will be our normal until she is about 5 years old.
Having a child with any sort of disability is hard. No matter how strong your village is, no matter how much research you do, it is hard. I felt like I was in a haze for the first year of my child’s life. Head down and pushing forward. That is all I could do. She is now 3.5 and I am just starting to see the light at the end of the tunnel.