In August 2003, I was ecstatic to learn that I was pregnant. Time flew by quickly—until February 2004, when life came to a complete halt. At a routine visit, Nate and I were told that our baby seemed a bit smaller than normal and that we should go for some additional testing.
Within the next weeks, we saw numerous technicians, doctors, and cardiologists. All confirmed that our daughter’s heart hadn’t formed correctly, and she was diagnosed with Hypoplastic Left Heart Syndrome.
At the time, we were living in Des Moines, Iowa, without any close family. After much prayer and research, we decided that it would be best to return back to Pennsylvania where we were originally from so that our daughter could have the best care in the country at the Children’s Hospital of Philadelphia.
Hypoplastic Left Heart Syndrome can be resolved through a three-step surgery process over the course of the first few years of a baby’s life. Children’s Hospital of Philadelphia had a 90 percent success rate. We were optimistic.
Alexa Saige Van Steenvoort arrived in Philadelphia on Thursday, April 29, 2004, at 6:30 a.m. She was 5 pounds 2 ounces and 17 inches long—and beautiful! We held her for about 10 minutes before she was carried away for review and care.
One of the most difficult days in my entire life came on Monday, May 3, 2004—the day of Lexi’s surgery. We arrived around 5 a.m. so that we could spend an hour holding her. Up until that moment, I’d only held her once or twice and only for a minute or two at a time since she was attached to numerous machines. But that morning, the nurses maneuvered the lines so that I was able to hold her in a rocking chair while Nate kneeled beside me.
When the dreaded hour came for her surgery preparation, we walked with the nurses through the hospital corridors until we weren’t allowed to go any farther. I had to hand her over and trust that God would take care of her.
It was a long day with many tears. The surgery went on for quite some time, and we received numerous updates from Lexi’s nurse. Then the surgeon came to speak to us. He explained that things had seemed to go well at the beginning but that Lexi’s heart wasn’t able to support itself at the moment and that she had been placed on a machine that pumped her blood for her.
A little while later, we were able to see our daughter again. This time, she had even more tubes attached to her.
The next 10 days were a blur of spending long days at the hospital and short, sleep-interrupted nights at the Ronald McDonald House. Our family wouldn’t let us stay at the hospital since we needed some sleep, so the three sets of grandparents all took turns spending the night with Lexi. They sang to her, told her stories, and made some beautiful memories. At some point every night, I would call Lexi’s room to talk to her nurse to make sure that she was doing OK.
Letting Go and Letting God
One night when Nate and I were upset about the situation, God gently reminded us that Lexi is His child. We completely surrendered her to Him and His will that night.
The surgeon met with us the following day and explained to us the seriousness of our situation and the implications of continuing the use of the machine to help Lexi sustain life. The longer a person is on it, the less chance they have of ever recovering. At that point, things were not looking good, and some of Lexi’s organs had begun to fail.
We decided to remove her from the machine, knowing that she would have a small chance of survival. As soon as we let go, God was able to complete His good and perfect will for Lexi’s life. Lexi met Jesus at 6:29 p.m. on Wednesday, May 12, 2004.
But the story doesn’t end there. Just a year after Lexi died, God gave us another beautiful daughter, Jada Olivia, on Sunday, May 8, 2005. He has also blessed us with a son, Beckett, and a daughter, Tenley.
God has taught us so much through Lexi and her short life. One of the blessings we’ve found through her is the Children’s Heart Project, which has helped our healing process. I don’t know the first time I heard of the organization, but, at some point, God nudged us to get involved.
While Lexi had been at the hospital, we had received a care package that included foods we could take with us and eat at the hospital. It was such a blessing. We wanted to offer that type of blessing to others going through similar difficult situations but didn’t know exactly how to do it.
I made contact with Children’s Heart Project and asked them about care packages. They agreed to let us send them to the children that they bring to North America for heart surgery. For the past eight or nine years, we’ve been sending care packages to most of the children who come. Our family goes to the store to buy items such as cereals, soups, toys, and a Bible. We also include a note of encouragement reminding the children how much God loves them.
In recent months, I’ve also been given the privilege of meeting some of these children in person and accompanying them back home. It’s been an amazing experience to see firsthand how the Children’s Heart Project is helping these children and their families.
Eleven years ago, we lost our daughter. Although it’s still difficult at times, I never imagined how God would use her short life to accomplish so much within our own lives and the lives of others. He is faithful!
“And we know that all things work together for good to those who love God, to those who are the called according to His purpose” (Romans 8:28, NKJV).