Lindsey’s Story
By Lester Hand, Lindsey’s Dad
Beginning with the first time she saw daylight she had been fighting for her life. On May 12, 1995, Lindsey was born. As she was delivered, I remember my wife asking why isn’t she crying. My mother-in-law and I both lied to her and said that she was fine; however, she was not breathing and had turned purple. The healthcare team worked on her, but she did not take a breath for the first 7-8 minutes of her life. After what seemed like a lifetime, she stabilized. She looked much better and was placed in a small oxygen tent.
The next morning I went back to the hospital where my wife and daughter were staying. We walked down to see her, but she just didn’t seem right. She was real fidgety and we thought she may be having seizures. We called over the nurse and she thought the same thing. The nurse called the pediatrician to tell him what was going on. When he got there, he agreed, and they immediately transferred her to another hospital that could handle kids in her condition.
Later that night they decided to put her in a drug induced coma to try to stop the seizures and to control the swelling in her brain. As she was stabilized, we finally felt comfortable enough to go get some rest.
Sunday morning we went to see her and nothing had really changed. We stayed most of the morning and then decided to go get some rest. About 2 p.m. we got a call that we needed to get back to the hospital. When we got there, the Doctors informed us that she may not make it through the night. We decided to stay all night preparing for the worse. When we woke up the next morning they said she had stabilized the best she could. This was just the beginning of the fight she would put up for 25 years.
Lindsey spent the next couple weeks in the NICU as her condition improved. Everyday was spent by her side. At that time, I was in the Airforce and was able to work a hardship transfer (PCS) to Scott Air Force Base to be closer to family and St. Louis Children’s Hospital. My wife and Lindsey were flown to St. Louis from Colorado by an Air Force C-141, where we would remain for the rest of her life.
After we got settled in St. Louis, Lindsey had several tests because it was thought that her condition was genetic. They would eventually give her 3 months to live, then 6 months. As the test all came back negative, it was determined that the cause of her condition was from not breathing at birth.
The first seizures Lindsey had after moving to St. Louis was on a Saturday. I was working at Circuit City and got a call from from my wife. I think I was a doing 100 mph down I-64 heading toward Scott AFB so we could get her to the hospital. They ended up starting her on her first seizure medications.
The next year or so consisted of occasional tests and brain scans but nothing more.
As Lindsey got older, we began to see developmental delays in her ability to walk, talk, and see. The one thing it never affected was her hearing. She learned to recognize voices and sounds. She knew the voices of me and my wife, her siblings, doctors, therapists, dogs, and although she could only see shadows, she would turn her head and look for where the voice was coming from. After a long hospital stay, she would light up at all the noise in our house and you could tell she was glad to be home.
Years later in October of 2011, Lindsey’s sister had a softball tournament so we all got up early to go. We knew it was going to be a long day at the fields, so my wife’s mother came over to watch her. I got Lindsey ready and then we headed out. When we finally got home later that day, we walked into her room and realized that something wasn’t right. She was lethargic and was a grayish color. We normally didn’t like to call an ambulance but that night we did. When the EMT’s got to the house and started examining her they asked where we wanted her to go. Of course we said St Louis Children’s Hospital, but she wasn’t stable enough to make it all the way there so they decided to go to a closer hospital. We followed them there not realizing how sick she really was. As they stabilizing her, the Children’s transport team happened to be near the hospital and was able to store and pick her up. Once there, Lindsey was admitted directly to the PICU, and we were directed to a conference room awaiting updates.
Finally at 2:30 a.m., the staff takes us back to see her. It was clear that she was much worse than we originally thought. We walk in the room and it looks like a Christmas tree sitting behind her as there are so many monitors and IV machines. It turned out that she had become septic. We were told that when she arrived to the unit, she had a heartbeat but no blood pressure. I should have realized something was wrong the night before when I gave her a bath because normally she fights me the entire time but that night she just kind of tolerated it. The next 24 hours were very critical. We finally got home to get some rest. The next day one of us went back down to Children’s and the other took one of our other daughters to her game. She seemed to stabilize so we both went home for the night. On Sunday night about midnight, I get a call that I need to go back down there and that they had to insert a chest tube. I go back down and watch as they work on her, not knowing how if she will come out of this or not. She was intubated for a couple weeks before she was stable enough to be extubated. She spent just little over a month in the ICU before she recovered and was able to come home.
In December of 2018, my wife called me at work and told me that Lindsey wasn’t breathing and that she had called 911. I immediately left work and started driving toward Children’s Hospital because I figured that was where she would be taken to. However, she had different plans. I got a text from her mom letting me know she was going to Mercy instead and not 5 minutes later that she was going to St. Luke’s Hospital. So I change directions and drive a little over the speed limit trying to get to the hospital. I got to the hospital at the same time as the ambulance. I rush into the ER. As I looked at my wife, I knew Lindsey was in trouble. She was on the stretcher with an EMT on it with her doing CPR. They worked on her for about 45 minutes, but could not get her heart started. So my wife and I decided it was time to let her go. I gave my wife a hug and walked out of the room. When I got back to the room I heard the noise of a heart monitor. I looked at my wife, and she said she walked up to her and said her name and Lindsey took a breath. Then she took another one. My wife said she looked at the ER doctor and told her if Lindsey wants to fight let’s fight with her. The staff immediately came back in and intubated her and were working on getting her stabilized. Once she stabilized she was transferred to St. Louis Children’s Hospital thanks to the swift work of one her ICU doctors and her pediatrician who both came to the ER to help and support us. This hospital stay would last about a month, but as normal, Lindsey pulled through and made it home to us.
On the morning on May 28, 2020, my wife went down to check on Lindsey and yelled up to me that she wasn’t breathing. I got up as quickly as I could as she called 911. I ran down and started CPR. I don’t know if I was doing it correctly or not, but I was just trying to keep her here with us. Once the police showed up, they took over. Once I caught my breath I got up and changed quickly because I thought she’d come back because she always has. But this time was different. She was already gone. It was just her time. We all miss her every single day, but we are thankful that she didn’t suffer as she took her last breath and that she passed away peacefully at home with us and without tubes, wires, and IVs.
Everyday there is something that reminds me of her. Anything from seeing another kid in a wheel chair, to seeing a van like she had, and especially this feisty little Cardinal that lands outside my office window every day. We know that she’s with us everyday, even if it’s not in physical form.
