On July 20th, 2010, we welcomed our 4th daughter into the world, Annabelle Lillian Faith Phillips.
All 4 of my daughters are special and unique, however Annabelle was born with challenges that would change our lives–and the lives of all who know her–forever.
The OG Diagnosis:
At 26 weeks, an ultrasound confirmed that Annabelle had a variation of HLHS (Hypoplastic Left Heart Syndrome.) Her official diagnosis was an unbalanced AVSD (Atrioventricular Septal Defect) with a hypoplastic left heart and aorta. Basically, instead of one valve to the right ventricle and one to the left, she had a hole in between them which made them one big valve. On top of that, it was “unbalanced” meaning the one big valve was more over the right ventricle than the left, which caused limited blood flow to the left ventricle, thus the hypoplastic left heart and aorta.
There is no “fix” for a hypoplastic left heart. Annabelle’s left ventricle was too small to be viable, so she had to undergo a 3 stage single ventricle repair. At the time, we were given a 80% survival rate of the first surgery, and a 60% overall survival rate after the 3rd surgery.
As a mother, those odds scared the living daylights out of me. As a Christian and follower of Jesus, I remained confident that God’s hand was on my daughter and the odds meant nothing, knowing that God was in control.
Annabelle had her first surgery when she was six days old. She had several complications, including one very scary night two days after surgery where they had to do CPR and put her on ECMO.
In January, when she was six months old, doctors told us they could no longer repair her heart. Annabelle had yet to come home, and her heart would not tolerate any further intervention, so transplant was our only option.
On Thursday, January 13th, 2011, Annabelle was officially added to the heart transplant list. We prayed and waited for a new heart, very saddened to know this could only come about if another parent faced the unimaginable loss of a child.
But God is a big God, and we determined to trust Him during those times.
On Saturday, April 9th, at 3:30 in the morning, we received THE call we’d been waiting to get for almost 3 months. A donor heart was available, and it was a good match for Annabelle! We are deeply indebted to the donor family, for their gift amidst the very horrible tragedy they were facing. Words cannot express our gratitude.
Annabelle was finally released from the hospital for the first time on May 24th, 2011, 308 days after birth. Home was not easy. She was in and out of the hospital, including another emergency open heart surgery the following month on her new year, and going into respiratory/heart failure at home in late July, necessitating being lifeflighted back to the hospital
But God was by our side each step, and we are so thankful that He took care of our little girl and put such an amazing medical team by her side!
The years after that became semi-normal. Lots of hospital stays for illness because of her suppressed immune system. Eventually she got an autism diagnosis at the age of 11, not uncommon for heart kiddos who have had a lot of trauma and limited oxygen to the brain in their early years. 2018-2022 we spent working with doctors trying to tweak meds and therapy to best help her, but heart-wise, all was amazing!
Trauma Summer & Cancer
Annabelle calls Summer 2023 “Trauma Summer.” For reasons still not quite known, her body decided to start producing mass amounts of blood clots, known as a Thrombotic Storm. She spent almost three months in the hospital–where we almost lost her multiple times. Having a baby in the hospital is HARD. But having a teenager who begs you to make it better and begs you to let her come home for her birthday– a request you have to deny–is almost soul-crushing. But she did make it home, and she slowly started to improve.
The following summer, Annabelle was better than the previous summer, but still far from herself. She was tired and weak all of the time. Doctors finally diagnosed her with Post-Transplant Lymphoproliferative disease (PTLD), or for short, Post-Transplant Lymphoma. This is a known risk of organ transplant due to the need to suppress the immune system; however, most PTLD cases happen in the first few years after transplant. It is very rare to occur so far out. Fall/Winter 2024, she successfully underwent chemo to treat her PTLD.
Annabelle calls summer 2025 “hitting” summer. The years of sickness and treatments had taken a hard toll on her mental state, and the chemical balance in her brain was not great, so she began to have severe episodes of self-harm. Eventually we got her medication figured out, and some behavior therapy, and she started to improve–just in time for her PTLD to return a second time in Fall 2025.
We did a stronger course to chemo that time, and for the second time, she was cancer-free…
Which lasted right about two months. 2026 has brought “Cancer x 3” as Annabelle calls it, and she is currently being treated with a different kind of chemo, which has had mixed results.
But we aren’t giving up. God has brought our sweet girl through more in her sixteen years than most of us battle in a lifetime.
Through it all, she has never once stopped worshiping Jesus. Her favorite thing to do is to swing with her headphones on and belt out praises to Jesus as loud as she can. Her Mommy’s favorite thing to do is to listen to her!
I stopped blogging back in 2017/2018 — but I blogged a LOT before Annabelle was born and in the years after her birth.
After we found out about her heart, I wrote a few blog posts that I have often referred back to during her journey. I’ll be honest–16 years later, some days I’m a little jaded and look back and call myself all kinds of naive. 29-year-old Krista had NO idea what life would be like post-Annabelle or how hard things would actually get. But… current-day Krista can still learn a lot from that starry-eyed, childlike faith she had back then.