In honor of American Heart Month, we are sharing Gabrielle’s incredible journey from sick baby to healthy toddler.
Christen Simon was 18 weeks into her third pregnancy when a routine ultrasound revealed the unthinkable: a serious birth defect. The daughter that Christen and her husband would call Gabrielle would need a heart transplant soon after birth.
“At that point I was in shock,” said Simon. “I didn’t know heart defects existed before that point in time. It wasn’t even in my scope of possibilities, not for my daughter.”
The journey begins
There was no reason to suspect something was wrong with Simon’s baby. She felt fine, but her midwife advised her to see a doctor for a second opinion after an ultrasound revealed something was amiss. Concern began to creep into Simon’s mind. Could something be wrong with her baby?
Originally from Tacoma, she scheduled a follow up appointment at Northwest Children’s Heart Care. At 24 weeks, the Simon family received a diagnosis: hypoplastic left heart syndrome, a rare and serious heart defect that, over time, can cause heart failure. Gabrielle was also diagnosed with a second heart defect, a coronary artery fistula, which further complicated matters.
Due to the extremely complex nature of Gabrielle’s condition, the Simon family decided to come to Seattle Children’s Hospital for treatment. So at 26 weeks of pregnancy, Simon and her husband met with the Seattle Children’s Heart Center fetal echo team. Surgery to fix Gabrielle’s heart wasn’t an option, because of the location of the second defect. The cardiologists told Simon that her daughter would need a heart transplant.
“Learning my baby had a heart defect was a shock. Learning my baby had a second heart defect was unthinkable. Learning about the heart transplant took my shock to a whole other level,” said Simon.
Making a plan
To Simon, the beat of her daughter’s heart sounded normal, which made the situation all the more unreal.
“Every single week we were somewhere, meeting with someone to make sure Gabrielle was okay. It was overwhelming, but the positive of having so many appointments was being able to hear Gabrielle’s heart, over and over and over again,” said Simon.
The early diagnosis meant that the family had time to make a plan, and to make sure they were ready for Gabrielle’s arrival.
“We were able to meet everyone that would be riding the roller coaster with us,” Simon said. “It helped us significantly knowing that every piece of the puzzle was put together as well as it could be. We’re so thankful we found out she had a heart defect before she was born, instead of learning about it after.”
The plan was to give birth at the University of Washington Medical Center (UWMC) and then transfer Gabrielle to Seattle Children’s. At 38 weeks, their plan went into motion.
Gabrielle was born on May 11, 2010, at 11:40 a.m., with more than 50 doctors, nurses, cardiologists and residents ready to welcome her into the world. Everything went smoothly. Gabrielle looked great and was stable enough to be transported to Seattle Children’s.
“We knew she would be whisked away. It was part of the plan, but it was nice to have a little time before she was transferred to Seattle Children’s to spend as a family,” said Simon. “We said our hellos and goodbyes and then my husband left to go to Seattle Children’s with Gabrielle. Saying goodbye was the hardest part, but I kept telling myself I had to stick to the plan.”
Settling in…and waiting
Gabrielle seemed healthier than anyone had anticipated.
“Our only concern was keeping her stable, and adjusting to what stable meant,” said Simon. “We didn’t know if she would be on life support waiting for a heart, or if she would be well enough to come home. At that time we weren’t focused on when a new heart would be ready, we were just focused on keeping her stable.”
One week into her journey, Gabrielle underwent hybrid cardiac surgery with Michael McMullan, MD, surgical director of Heart Transplantation at Seattle Children’s. The procedure combines surgery and cardiac catheterization and can be life saving for babies who are too sick to go through open-heart surgery or too small for typical treatments using catheters.
“For kids who are born with one ventricle, the most common approach for treatment is to proceed with a series of three operations over a span of four years. Gabrielle also had an abnormality of the coronary arteries, which put her at higher risk for having problems,” said McMullan. “For kids, like Gabrielle, who are at high risk, instead of doing the first operation, we perform the hybrid cardiac surgery, which is a minimally invasive way to get to the next step. That step, for Gabrielle, was transplant.”
After three weeks in the Cardiac Intensive Care Unit (CICU), Gabrielle was well enough to leave Seattle Children’s.
But the family’s journey was far from over. With a pager in hand, they returned to their home in Tacoma to wait for the life-saving call saying that a heart was available for Gabrielle.
“I held on to that pager with my life”
The wait was agonizing for Simon and her family.
“There were two times I called Seattle Children’s because I got nervous the pager wasn’t working. I replaced the battery and called because I thought I messed it up, but every time they reassured me and we continued to wait. I held on to that pager with my life,” said Simon.
Every week she would check the hospital bags they had packed just to make sure they were still ready to go at a moment’s notice. When needed, she would change out the clothes in the bags for bigger sizes. Gabrielle was growing.
Every day they waited, wondering if that day would be the day they would get a call from Seattle Children’s transplant team.
“Waiting was difficult, because you’re waiting for someone else to say goodbye to their baby,” said Simon. “I wasn’t waiting for me. I was waiting for someone else. As excited as we were to get a call, we were also terrified. Gabrielle’s only chance of life was with another family. It was heart-wrenching to know that the worst moment of someone else’s life would save Gabrielle.”
And then, on Nov. 13, 2010, the phone rang. The transplant team said they received an offer and had a heart. Nothing was set in stone, but they had a heart for Gabrielle.
“I dropped the phone, literally dropped the phone,” Simon said. “We took pictures, had a few minutes as a family, got our bags and headed up to Seattle Children’s.”
Pink skin and a new addition
Gabrielle’s new heart was attached, and surgeons watched and waited for it to start pumping blood. It did. Thump-thump-thump. The surgery was flawless. Gabrielle had a new heart and a new beat.
“They kept on telling me there would be more medical equipment than you can imagine and to be ready for it,” said Simon. “It was overwhelming, but the first thing I noticed was my kid was a different color. I never really thought she was a different color until then. I knew I didn’t like putting her in purple clothing because she looked really blue, but at that moment I knew what everyone else had been talking about.”
Attached to medical equipment, with a bow up high on her head, Gabrielle woke up in the CICU a completely different baby.
“She woke up. They gave her a little sugar water in a bottle. She drank it like it was the best thing ever,” said Simon. “After that, we just knew everything would be okay.”
After just 14 days in the hospital, Gabrielle was ready to go home.
“Gabrielle did amazing,” said McMullan. “We’re constantly looking at kids with heart disease and finding ways to really customize the treatment approach. For Gabrielle, we had the opportunity to treat her unique heart problem in the safest and most effective way possible, which lead to a quick recovery.”
Leaving Seattle Children’s wasn’t easy. With more than 18 different medications to manage, Simon and her husband were quickly immersed into a new life. But as time passed, the family got into a routine, and life went back to normal – a new normal.
“All the doctors and all the nurses went above and beyond to save Gabrielle’s life. They are the miracles,” said Simon. “The fact that medical technology exists and that those people were brave enough to deal with me on a daily basis and my momma bear fits. To sit with us for three hours and explain to us the same thing over and over and over again, it was miraculous. The transplant team was with us through every single bump. They have become part of our lives and have made this journey much easier.”
Today, Gabrielle is a healthy, happy toddler. For those who meet her for the first time she seems like any other kid. And soon, she’ll be a big sister.
“Deciding to have another child was difficult. I kept wondering if we could lose the genetic lottery twice,” said Simon. “As soon as we found out we were pregnant we immediately called the transplant team.”
At 18 weeks, Simon met with Seattle Children’s fetal echo team. She needed to hear the beat of her baby’s heart.
It was perfect.
