August is Spinal Muscular Atrophy Awareness Month. This is the disease that took my daughter’s life, and is taking the lives of innocent babies all over the world, every single day. SMA is like ALS, but in babies. 1 in 6000 babies a year are born with this rare genetic disease. There is NO treatment or cure. 1 in 40 people are carriers of this deadly disease. If two carriers have a baby, they have a 1 in 4 chance of the baby being born with SMA. Currently, SMA is NOT part of the newborn screening process.
Educate yourself by visiting these informative sites:
Getty Owl Foundation
Gwendolyn Strong Foundation
Donate to CureSMA.
Week 8 (March 23)
Not much to report for symptoms. I’ve been able to eat food without feeling queasy afterward, but I still vomit after taking my prenatal vitamin. On Wednesday I went to my Prenatal Nutrition group at FEN. All the same girls are there.
At the end of the week I emailed Claire Goldsmith, our genetic counselor from CHEO. She wants us to have a video conference when Jordan and I return from Florida to discuss having the new baby tested for SMA. I’m interested to know if cord blood can be used or if it has to be a blood draw.
Week 9 (March 30)
Week 10 (April 6)
Florida and Kingston!
Week 11 (April 13)
During the past couple weeks, on our trip, I would feel queasy in between meals again. I had to keep snacking. Restaurant food didn’t always agree with me. But I still managed to have a good time. The most exhausting part of the trip were the full days spent at EPCOT and Magic Kingdom. When we returned to Ottawa, we drove to Kingston and stayed at my mom’s to prepare for Khloë’s burial on April 11th. That day the weather was beautiful (after a rainstorm the previous day). Afterward, we held a small reception for friends and family at the church we attend in Kingston.
April 16th marks three months that my baby girl has been in Heaven. It is the strangest feeling to be a mother but to not have a child in my arms. Even with the new baby, there will always be that blank space where Khloë should be. She is in my heart.
I also had a midwife appointment mid-week. Suki will be sending Claire a referral for the genetics appointment. My blood pressure is still low at 90/60, but Suki wasn’t concerned since it seems to go up a little at each visit. She also found the baby’s heartbeat: 160 bpm.
I was washing dishes this morning and thinking about Khloë and then about the new baby. And I realized that this time around, if this baby is healthy and does not have SMA, then our life will be filled with all these milestones that we’ve never experienced before. How crazy is it that, as a second-time mom, I have never had the joy to watch my baby grab for a toy within her reach? I never saw my baby learn to roll over or sit by herself for the first time; she never crawled or pulled herself up to standing; she didn’t even take her first steps or learn to feed herself. All of these little things will be brand-new to us.
Instead, we watched our baby grow taller but also weaker. She had her first surgery at 8 months old–a feeding tube to allow her proper nutrition. Then we learned how to operate a Joey feeding pump, clean out feed bags, prepare formula, and care for her tube site. After that intervention, to help prolong her life, came the BiPap machine and another hospital stay. Any time Khloë took a nap or went to sleep for the night, Mommy or Daddy would put the Pixi mask on her face, check the leak, make sure she was comfortable, and then off she would go to dreamland. By the time she was 11 months old, she was requiring us to suction her mouth and throat much more often; this meant she was losing her ability to swallow. Twice a day, we would perform a cough treatment to make sure all the yucky stuff in her lungs got out because she couldn’t cough it out on her own.
All these things, they were Khloë’s special milestones.
But I had the most amazing daughter. She liked music and loved it when Daddy helped her play xylophone or strum a guitar. She enjoyed watching “The Magic School Bus” and “Chuggington” on Netflix. She especially liked when one of us would dance around with her in our arms! She would lay contentedly on her ottoman, playing with her Do Not Enter sign and Sharkie, until she dropped one of them; then she would wait patiently for Mommy to pick the toy up and give it back to her. She rarely complained or cried. She was always so happy, no matter what we did during the day. Her giggle will always be the cutest thing I have ever heard. I think that’s what I remember the most.
Things are going to be very different when the new baby comes. I think we are up for the challenge!
Tomorrow, my little girl would have been fifteen months old.
SMA is a cruel disease.
A letter to our baby girl on the day of her celebration of life:
January 21, 2015
On the day you entered the world, your Daddy and I became the happiest people on earth. We were given a perfect little girl. We knew we would do anything for you, no matter what. You already had us wrapped around your finger. Watching you grow from a teeny baby into a toddler has been a privilege.
Our favourite part of the day was waking up and going into your room to be greeted by a big smile. You knew that we were there to give you a kiss and bring you out to the living room to play. And did you ever like to play! It didn’t matter that your body was weak; you still found a way to stuff Sharkie in your mouth, toss your Do Not Enter sign on the floor so we had to pick it up over and over again, or play xylophone and strum the guitar with Daddy. The look in your blue eyes whenever you discovered something new was priceless.
You were one lucky girl, let me tell you!
Khloë, you were the strongest little person we knew. You fought a terrible disease every single day, but didn’t let it get you down.
We have so many wonderful memories of you, Sweet Pea: your first laugh, dressing you up for photo shoots, playing peek-a-boo under a blanket, swimming in the tub, camping in Bar Harbor, and the first time you said “a-bah a-bah” which sounded suspiciously like a chicken bawking.
Daddy and I will never forget the light you brought to our lives. Today we celebrate your beautiful life.
Hugs and kisses,
Momma and Dadda