By Mia Woods
Mommy to Fable
Backwards Heart; Single Heart Ventricle
Born December 2023
I was 20 weeks pregnant when we found out about Fable’s diagnosis – a backwards heart and single heart ventricle. At 36 weeks, I went in for a checkup and my baby’s heart rate was 280. I was quickly rushed to OB emergency where her heart rate hit 310 and continued rising. So, without explaining anything to my boyfriend or me, they came and took me to have an emergency c-section. It was scary, and she was here very fast! I wasn’t able to see her until 5 hours after giving birth, and when I did she was intubated, and covered in wires. It was a lot. The doctors wanted us to sign a DNR but I couldn’t do it and I’m so glad I didn’t.
Doctors didn’t think she would make it, but she has! She went in three weeks after birth to have one of the three surgeries she was supposed to have, the shunt. It went well with no complications. She then began having severe SVT (at 310 beats per minute and rising), which is the arrythmia that we had issues with when she was born, and it weakened her heart muscles so bad that she was unable to have the next procedure. So our choices were hospice or heart transplant. And I know my baby is a fighter so we chose transplant and she’s continued to defy odds every day. She was intubated for 6 months due to her arrhythmias and she went on to have an ablation, which in turn made her the youngest successful ablation in the country! The procedure changed her life. She’s extubated, on full feeds and working on sitting up on her own. She’s getting better and better every day as we wait for her new heart to bless us.
I already worked on the CVICU at the children’s hospital so I had seen a lot of cases similar to my daughter’s so my hope was to have the shunt, come home, come back to have the Glenn procedure done, and then return when she was older for her last surgery, the Fontan procedure. We didn’t expect her to have SVT so severely that it would change her entire course of treatment, and we have yet to bring my sweet girl home in her first year of life.
I spend a lot of time in the hospital, for both work and for her. And I’ve grown to miss my home even though I live 10 minutes away. I never got to breastfeed, Fable hasn’t had a bottle since she was 3 weeks old, and she only recently got to go outside for the first time. I have a very full household, which is me, Riven (Fable’s daddy), my sister and my best friend, who moved in to help with Fable’s care when she comes home. We all face the challenges of making sure Fable is hardly alone and knows she’s loved, and also balancing our personal lives with that. But overall her diagnosis has taught us to cherish her because we’ve come so close to losing her so many times.
Fable is still on the CVICU at our local children’s hospital and continues to wait for a heart. She is officially off all oxygen support and is being fed through a tube in her nose. She is slowly coming off sedation; she’s a little delayed but we’re working on that with physical and occupational therapies.
I hope Fable gets a heart and comes home and that I never have to bring her back to the hospital again. I feel like this experience has ripped my motherhood away from me and I can’t wait to just raise my baby girl.
The images On Angels’ Wings has done so far much to me. They were Fable’s first real pictures. She wasn’t able to get newborn pictures due to being in the hospital so these will forever be how we remember her when she was this little. I also hope to use them to teach Fable about her own journey when she’s older. OAW helped me get some precious memories and it was so easy to set up. I feel like I’m constantly having to plan, and organize things and this was all just so easy and my photographer was so sweet. I love talking to my mom friends in the CVICU unit about OAW – I tell them you are so understanding and accustomed to what our kids and our families are going through.
