‘It was a war just to keep my newborn ALIVE.’: Medical mom praises daughter born with Severe Combined Immunodeficiency, dwarfism

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“Let’s begin back when ‘medical mom’ wasn’t even a term in my vocabulary or even commonly used. Actually, I never even knew any family member or friend who ever needed a long-term hospital stay. And ‘Children’s Hospital’ was something I hadn’t even heard of. Today, to me, that’s sad. I never want to be the person I was before my daughter Bella was born, I never want to be that small minded again. Now that I am a medical mom, I see what matters in life. I see where my effort is best spent and it’s not wallowing in the anger of the cards we were dealt. It’s best spent educating others in a positive light, raising awareness for rare disease and lifting up others. Because this is where the healing for myself comes from. I want to help others heal so I can heal as well.

Months after my husband and I had gone through our first pregnancy that resulted in a miscarriage, I became pregnant with Bella. Still oblivious to what new parenthood would look like or be like, we never had any strict birth plan, ‘breastfeeding only’ plan – nothing of the sort. We also never knew if we were having a boy or a girl. We were ready to follow our babies lead with whatever would happen, open to whatever the doctors thought was best and what our baby would need. Turns out that was a good way to be because once Bella was born we never even got the option to choose between breast milk or bottle. IV nutrition and ng tubes were what was needed to keep Bella alive.

I also never knew she would stop growing in my second trimester, or be born with 2 very rare diseases and dwarfism. We were in no way prepared for the life we would fall into after Bella was born. All through my pregnancy she kicked, moved, rolled and was a very active baby. She knew how to calm mommy’s nerves by being quite active right up until delivery.

Young woman pregnant with her rainbow baby after a miscarriage smiles in a black and white polka dot dress
Courtesy of Kyla Thomson

During this time I was a public school teacher, typical wifey, born and raised Saskatchewan girl. The thought of pregnancy and birth terrified me, but we were ready and wanted a family. My pregnancy with Bella was super easy. I never got sick, not once, felt good all the way through as the little basketball in my belly bounced around with me everywhere I needed to go. Once I was into my second trimester, my doctor noticed baby had stopped growing, but after an MRI and many tests we thought at most she may be little and no worries came along with that whatsoever. We never realized this was our first clue into Bella being born with dwarfism and multiple other health conditions.

My due date was actually a month long range of dates that my doctor tried to narrow down. This was because of baby’s growth having slowed, so it was difficult to determine when she would be born based on all of the usual ways doctors determine that. So my original due date based on my second ultrasound was actually the most accurate; December 5, 2013. But after the MRI I had at 6 months pregnant, the due date ranged from November 21st to mid December. My doctor at the time had settled on November 28, 2013 as an official due date so when Bella was born on December 6, she was actually a week overdue, technically. I think she was right on time.

Newborn baby girl with dwarfism sleeps in the hospital while swaddled up in a blanket
Courtesy of Kyla Thomson

My water ‘broke’ at 2 a.m., but looking back now it had actually leaked and I didn’t know it. This resulted in a longer labor and fever. So after 30 some hours of labor, not progressing past 6cm dilated and developing a fever, my doctor had decided on an emergency C-section for me. It all went really well and as soon as Bella popped out of my tummy our anesthesiologist (having the ability to peak over the blue sheet) announced, ‘It’s a girl!’ From there, my recovery was quite a blur and they whisked Bella away to assess her; my husband Lyle went with the pediatrician for that as I tried to recover post op.

Young new dad kisses his newborn daughter on the head while she's in the NICU
Courtesy of Kyla Thomson

December 6, 2013, I became a mom. December 8, I became a medical mom. I barely had 72 hours with Bella before she began vomiting, had not pooped, ng tube down her nostril, IV’s in her head and we were flown to the nearest NICU. I became a medical mom in those moments, initiation was grueling… but the type of medical mom and how I would use this title to help others was yet to come. I was just learning the ropes… the medical trauma, PTSD and mental health struggles were just warming up for battle. I had no idea what kind of war I was in for, just to keep my newborn alive.

Newborn girl born with dwarfism and multiple rare conditions sleeps on a pink blanket while being attached to various needles and tubes
Courtesy of Kyla Thomson

Through it all, I have remained forever grateful for the faith my mom instilled in me growing up. Having a Christian background, knowing the power of prayer and the comfort from God kept my head above water; it saved me. Already knowing miracles exist just proved Bella’s ability to survive after being born with SCID was God’s hand in our life. Have you ever had a medical professional look you in the eye and tell you it’s a miracle your child is alive, and then go on to say they have no medical reasoning as to how they ARE alive? I have, and that was when we found out at 11 months old Bella was actually born with SCID, or Severe Combined Immunodeficiency, meaning she was born with absolutely no immune system, no T-cells and no B-cells. She had no ability to fight viruses or bacterial infection.

Little girl born with no immune system and multiple rare diseases stays calm while attached to numerous tubes and devices
Courtesy of Kyla Thomson

In those 11 months from birth, Bella had gone through 4 major bowel surgeries for Hirschsprung’s (the rare bowel disease she was born with), Septic Shock and she lived in hospital the entire time! We hadn’t gone home yet. Bella never improved after each surgery, we never knew it was because she had NO IMMUNE SYSTEM! So to survive exposing her body to infection for each surgery with no immune system to fight it, was a miracle in our physician’s opinion and mine. Children born with SCID unknowingly die from the common cold… Bella survived septic shock and 4 bowel surgeries.

Little girl born with no immune system lays in the hospital bed before surgery
Courtesy of Kyla Thomson

The first year of Bella’s life was entirely spent in hospital with me by her side and my husband driving back and forth from home so he could continue to work, keep his job and our house functioning. The rare forms of the conditions Bella was born with kept her in the hospital while her doctors tiredly tried to figure out what they were dealing with and how to treat her. They got to a point where they knew they needed to refer us to an out of province children’s hospital. So, we left our home province of Saskatchewan and were flown to Alberta Children’s Hospital. We were no longer 3 hours from our home; now we were 6 hours from home.

Our first year living in the hospital was the worst. It exhausted me to my core. Barely being able to stand, I sat by Bella’s crib unable to sleep, hour after hour, praying she wouldn’t choke on her next vomit or be rushed off to another surgery. There are no words I can use to describe the pain, I can just type what I remember, but I don’t think I can even explain to you the torture I endured watching my baby go through countless pokes for IVs, x-rays, surgeries, pain, and vomiting all while wrapped in tubing, cords and inside hospital walls for 2 years straight.

Newborn baby girl with dwarfism looks at the camera while her mom snaps a photo of her in the hospital
Courtesy of Kyla Thomson
New mom holds her daughter born with no immune system while she's living in the hospital
Courtesy of Kyla Thomson

After the first year in hospital, after we had transferred to a Children’s Hospital and the most recent bowel surgery seemed successful, I had the most hope ever of finally taking my baby girl home. But instead, we discovered she had SCID and the treatment for that was a bone marrow transplant. After thinking we were only dealing with bowel issues for an entire year, we were now told she was actually born with no immune system and this is a whole other rare disease we are now dealing with in my baby girl. The doctors told me to prepare for another year in the hospital. It felt like someone had sucked the breath out of my lungs and ripped my stomach clear out of my body. Just when I thought it was all over, it was really just beginning.

But then something changed in me. Looking back, I can see this was the largest transformation I believe I made while morphing into a medical mom. This was where the breakdowns were at their worst, but my ability to react positively and with perseverance soon became easier. The chance where I could choose to continue down a path allowing  ear, complaining, and pain to take over or use it as fuel to ignite a new me, a new version of me that takes the pain, the hospital life, the rarest of rare situations and shares the journey, shares the high and lows in order to give others hope. To educate the world about my daughter so her future can be the best for her because more people would understand what she was going through and learn from it…making many lives plus my daughter’s much better. Knowing this medical journey was now life long, not ended by one surgery or one cure, meant I must now do everything in my power to make it the best for Bella no matter what medical mountain we were faced with next. I wasn’t going to let the waves of hospital stays drowned me, but instead use them as fuel to educate, heal and break the way for other new medical families.

Medical mom takes a selfie with her toddler daughter born with dwarfism and multiple rare diseases
Courtesy of Kyla Thomson

So, why share online? It took living in a hospital for over a year to realize this, but I learned complaining, screaming, yelling, and angrily explaining never helped. It never helped me, Bella or anyone else going through a difficult time. I needed to wake up! I needed to see no matter the level of pain I went through as a medical mom, screaming and yelling about it online never helped anyone. I woke up… I woke up when I made the change to vocalize our medical life in the most positive way I could no matter what level of pain we endured while living in the hospital. You see, I came to know many moms and their children who didn’t make it home from the hospital. I saw disease kill children, I saw other parents suffer just like I was in the rooms next to me and down the hall. You think they need to hear me complain while my daughter is still alive and breathing? No. Sure, she may still be in the hospital, but living there showed me there is always someone who has it worse and from there on out I wanted to use my online sharing as a platform to help other parents living in the hospital with their little ones or anyone going through really hard situations.

As I watched my daughter conquer every mountain she faced with a light only she could shine, I also saw how it helped other kids and their parents. I started to blog, post more on Facebook and Instagram, and from those posts I saw how raising awareness of everything we went through began to help so many people. From there, the best thing started to happen. I began to heal as well. Being able to share online, converse with other medical moms in Facebook groups, have people message me telling me how my post helped them gave me healing. It gave me an ability to get through the next long term hospital stay with Bella, and the next and the next. And here we are on the other side of over 844 days spent in the hospital awaiting the call for Bella to receive a bowel transplant and I’ve never felt more capable, more strength and able to support my daughter through it all. Choosing to share the peaks and valleys online in the most positive way I can gives others hope, and strength to fight what they are fighting.

Little girl born with multiple rare conditions poses in a Superwoman costume next to her little brother
Courtesy of Kyla Thomson

The resilience my daughter shows going through all that she has is the reason I never want to go back to who I was before I became her mom, a medical mom. Seeing her battle the medical life in its entirety all while keeping the joy, the smile, and the strength is everything I wish I could be myself and what I strive to be for others going through it. She has taught me what truly matters in this life and I want to share that with the world. We need to lift each other up. There is always going to be roadblocks, mountains and hardships… let’s learn to fight though them together and be brave, be Bella Brave.”

Medical mom takes a photo with her daughter born with dwarfism and no immune system
Courtesy of Kyla Thomson
Medically complex little girl smiles and poses in a floral dress with a flower crown
Courtesy of Kyla Thomson

This story was submitted to Love What Matters by Kyla Thomson – Medical Mom to Bella Brave of Saskatchewan, Canada. You can follow their journey on Instagram, Facebook, TikTok, and YouTube. Do you have a similar experience? We’d love to hear your journey. Submit your own story here, and subscribe to our best stories in our free newsletter here.

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