A Hypoplastic Left Heart Syndrome Warrior

My name is Britney, and my daughter is Kambreigh Faith. She was born with a severe heart defect called Hypoplastic Left Heart Syndrome.

I have two biological sons, who are 10 and 9, and two bonus boys, who are 11 and 6. So Kambreigh is the youngest of 5. We have a big, beautiful, blended family.

7 years ago, I was 23 weeks pregnant with my little girl after two boys and 6 miscarriages. I was so, so happy to finally be getting the little best friend I had dreamed of since I was a little girl. I had two young boys, ages 2 and 3. I went in for my “routine” anatomy scan, which had been pushed out due to yucky winter weather. Looking back now, I believe it was a God thing. The ultrasound tech did my ultrasound, and I saw the look on her face when she kept circling the baby’s heart. But she didn’t say anything and wouldn’t give me many pictures of her like I had in previous ultrasounds of my boys. When I left, I thought it was odd but brushed it off. As I did have two young boys with me, I assumed they just didn’t want to deal with them being rowdy.

When I got home, my OB called me and told me that they couldn’t see all of the baby’s heart, so they were sending me to a specialist to get a fetal echocardiogram to get a better look. About a week later, I found myself sitting at Children’s Mercy in Kansas City. As an entire room of doctors sat around a table, they told me Kambreigh had Hypoplastic Left Heart Syndrome, and she would need a series of three open heart surgeries to survive and eventually a heart transplant.

The first surgery would need to be done within her first week of life. The second was around 5-6 months of age, and the third was around 3-5 years, but she only had about a 50% chance of making it to her first birthday. They laid out all of my “options,” and the only one I could see was to fight for her – even if she was only here for a short time. I didn’t have much support. I didn’t even know babies could be born with heart issues, much less with only half of their hearts, and not everyone around me was too understanding. Her father was one. But no matter how much the amazing team at CMH tried to prepare me for her life, I don’t think even they were prepared for the roller coaster of a ride Kambreigh’s life would take us on.

Kambreigh was born on May 26, 2016, at Children’s Mercy. Her first 7 days were spent testing and waiting in the NICU. A lot of babies with HLHS do not survive the first stage of surgery, and it is said to be the biggest hurdle they face. Kambreigh underwent her first surgery at 7 days old. She came out of the OR very very sick, with an open chest, and after 12 hours of struggling to adjust, her heart just couldn’t keep up, and her tiny heart stopped. She received CPR for 60 minutes and was placed on life support (ECMO). When she came off ECMO 10 days later, she struggled with high heart rates and an infection and had a stroke. Her chest was finally closed after 25 days. The complications just kept coming, and if it wasn’t one thing, it was another.

I met Alivia Kraft and Lillian in the PICU during the time that the doctors were telling me that Kambreigh would not make it through her second open heart surgery and that listing her for a new heart would be wise. But her blood type and other things made that a more challenging task than we imagined. I remember standing in Lillian’s room crying and praying with Alivia and Ryan that God would let us all see a miracle. And watching as Lillian defied every single odd placed in front of her gave me the hope and the strength to keep pushing.

We were still inpatient after months and months. They finally told me we could attempt her second stage but warned me that she only had about a 20% chance of pulling through with how weak her heart was. But something in me told me that we needed to try. On October 5, 2016, she underwent her second major open heart surgery. She bled a lot, and recovering was so hard on her. After 15 units of blood, the bleeding stopped, and she finally came off the vent. She struggled really hard with her stomach and arrhythmias and withdrawing from pain meds, among other things. But finally, after nearly 7 months inpatient, she was able to go home!

She was only home for one month when I started to notice something was not right with her. Her right arm and leg weren’t moving, and she was very lethargic. I immediately took her to the ER, where they did a CT scan and found that she had a massive stroke and bleeding in her brain. The neurosurgeon wanted to go in and remove the clot, but it made me very uncomfortable, so I refused. I was told to never ever expect her to walk, talk, smile, or laugh because the damage was so bad. One week later, she smiled at me for the first time, and I knew she would be okay.

Fast forward, we had a lot of admissions due to arrhythmias, seizures, stomach problems, and viruses. She has had 11 cardiac caths, many, many procedures, and medical issues, yet she defies every single odd stacked against her. She started walking when she was 3. She inspired me to be an advocate, to stand up for not only her but myself as well. When she was 3, I became a single mother, and I went back to nursing school and graduated. Because of her, I had the strength to go after my dreams. If there is anything I have learned over her life, it is that sometimes life throws us curves and doesn’t play by the rules. But it can make us better people if we let it.

On October 13, 2022, Kambreigh underwent her 3rd open heart surgery after years of being told she may not be a candidate. When I met with her heart surgeon, he grabbed my hand and told me, “I didn’t know if we’d make it to this day, but I am so glad we did.” She did well with the third surgery, although in typical Kami style, she didn’t play by the rules, and we did have some complications. But overall, she breezed through it!

She is a 6.5-year-old that is so happy and full of life. She does have some developmental delays, but nothing stops her,  so she can do anything she sets her mind to. She loves ducks and chickens, anything girly, but also doesn’t hesitate to jump in a dog pile with her brothers. She is loved, so very loved. And she is more than I could ever have imagined. She is such a joy and a light. And even if she only has half of her heart, she sure steals every heart she comes into contact with.

Leave a Comment

Please note, comments need to be approved before they are published.