Baby Katie Beth Update

Author: Kevin Schlichter

Last February Melissa wrote an entry on Upstream Swimming about our daughter, Kathryn, and asked all of you to be praying for our family. Perhaps you’ve been wondering how that all turned out, so here’s a Thanksgiving update on her situation.

To recap, a few weeks before birth Kathryn Elizabeth (heretofore known as Katie Beth, KB, Kat, Kitty, Katie, or The Reason I’ve Been Super Angry and Not Sleeping for Nine Months) was diagnosed with ventriculomegaly, then born with congenital defects in her ears, nose, and mouth, and a couple of days later she was unofficially diagnosed with Zellweger Syndrome and tested positive for Human Cytomegalovirus (HCMV). Off the record we were told by one of her specialists that she had no more than six months to live—at the absolute longest. That’s when word started to spread. First our friends started to pray and word quickly spread to others in our church, then relatives, and then their friends and churches started to pray. We were getting cards, flowers, and e-mails from people we didn’t know all over the country telling us they were praying for us. And I don’t know why—I don’t know why He does anything that He does—but God answered those prayers in a way we didn’t expect.

Three days after she was born her ears had moved into a normal location and, although we had originally been told to expect difficulty, she was breathing and eating on her own. After a lot of blood samples, an MRI, and two months of waiting for genetic testing at the Mayo Clinic, her official diagnosis was made: Katie does not have Zellweger Syndrome—or any other known genetic defect. We had been praying for strength to get through the trial, hoping that the loss of a child wouldn’t ruin our marriage and that we’d be able to try again, but He had healed our daughter instead. She still has some brain damage and there may be other long-term effects from the HCMV, but so far she is doing well. In fact, she has been developing perfectly normally. She excels in her intelligence and fine motor skill tests at physical therapy (yeah, infant physical therapy) impressing her doctors with her ability to manipulate a pacifier into the correct position before putting it in her mouth, and her ability to hold her own bottle to feed herself. Kitty has been doing both of these for several months now. Her strength continues to lag, but not by a concerning amount and Robyn and I aren’t muscular anyhow. KB’s head is even a normal size—it was supposed to be disproportionately small as a result of the HCMV.

So this Thanksgiving we’re thankful for our daughter. We’re thankful that she’s here with us, but also for the experience—we grew as a couple and our relationship was affected positively by it. We’re stronger as a team; have a healthier perspective on certain things; opened up to each other and gained a level of intimacy we’ve never shared before. I wouldn’t wish an experience like this on my worst enemy, but I wouldn’t trade it for anything. Like everything else we do with God, it isn’t easy but it’s very worthwhile.

We’re thankful for our church family, friends, and relatives who supported us in very material ways. We fed not only ourselves, but at least one other family with the food that was brought to us at home and in the hospital. Our dogs were cared for, and we almost had our yard re-landscaped as well. Being around people like the Felkers pushes us to live our lives for God in tangible and meaningful ways. We’re thankful for the example you’ve all demonstrated for us.

Finally, and this is last because I want it to be remembered first, we’re thankful for your prayers. I don’t know why He healed Kathryn and not the other kids in the NICU, but seeing the People of God care for each other always encourages me immensely and provides the best witness I know of. So thank you for taking the time out of your day to pray for us, whom you’ve never met. You can’t fix everything, but you’ve made a difference to us. 

Capable: Finding Dignity and Community

Sean and I financially support HOPE International, which is a microfinance organization helping people around the world to escape poverty by providing microloans, savings services, training and mentoring. HOPE is a really cool organization – watch this video to see what they do and hear Fadzai’s moving story!

It’s the 10 Year Anniversary of my Husband’s Death

Well, depending on your technical definition of death 🙂 In any case, Sean came seconds away from meeting Jesus face to face 10 years ago today. An article was written about the incident in January of 2003 in the Pleasanton Weekly from his dad’s perspective, which I copied and pasted below:

The Day His Son’s Heart Stopped

Brian Felker headed out to the garage the morning of Nov. 9 with his son Sean, 18, happy to have him home from UC Santa Barbara for the weekend. As they were moving things in the minivan, Sean suddenly stepped out of the vehicle and lay on the ground.

“I thought he was goofing around,” said Brian Felker, who was feeling great to be with his son again. But his high spirits plummeted as he saw that Sean looked like he was having a seizure.

“His eyes rolled back. I went over to him and put my hand under his head,” recalled Felker. “I yelled at my wife to call 911.”

“His heart rate continued to climb and climb, like a horse in a race,” said Felker. “He was turning bright red. After some period of time, he then absolutely deflated. He then stopped breathing, his color went white. I couldn’t believe my son’s heart was stopping.”

Luckily Felker, who is a mechanical engineer at Lawrence Livermore National Laboratories, receives CPR and first aid training regularly.

“All I could remember was ABC – airway clearing, breathing and chest compression,” said Felker. “I stuck my fingers down his throat and pulled his tongue out. He took a breath on his own. He took a second breath but it was much weaker. Then he took in no breaths.”

Felker knew he had to do Sean’s breathing for him. “My first breath went into his stomach, I could see that it rose and that really disturbed me. I thought, ‘I know this is wrong because I want the air to go into his chest.’ I couldn’t remember what’s right. I went to give him air again and gave him a couple of breaths. This time his stomach was not bloating.”

At this point, his wife Joann came out of the house holding the portable phone. She relayed to the 911 dispatcher what was happening.

“I cleared his tongue again and said, all right, I have to do chest compressions. If I break his ribs I will love it if he hates me later,” remembered Felker.

All the time he wondered whether he was doing it right. He repositioned Sean’s neck, tipping his head back so he could blow the air in correctly. Chest compressions. Breathing. Chest compressions. Breathing.

“I kept this up, maybe six cycles and at that point could hear the sirens,” Felker said. “I said, ‘Thank you, Jesus.’ I lost track of time.”

Once he knew help was almost there, he relaxed and kept up the efforts. The paramedics told him to keep on going while they set up their equipment. “Within 15 to 30 seconds they said, ‘OK, sir, we’ll take over,'” Felker recalled.

“Another fireman touched me on the should and said, ‘Sir, you need to take care of your family.'”

He and Joann have three others sons: Drew, 15, Matthew, 12, and Jeffrey, 10. “Matthew had the presence of mind to run to our neighbor’s house, who is a fireman, but he wasn’t home.”

Capt. Scott Gatkin was on duty at Station 9 of the Livermore-Pleasanton Fire Department when the call came in.

“We found out the boy was in cardiac arrest,” said Gatkin. “We defibrillated. We put an endo-trachial tube in to facilitate his breathing and started an IV and started medications.”

He continued, “On the scene we were able to return his pulse and blood pressure. By the time we were at the hospital he had spontaneous breathing.”

“Even with all our equipment and our rapid response, if his father didn’t start CPR he may have survived, but he would not have been going back to school,” Gatkin said. “When the heart stops, there is no oxygen going to the brain and the cells start dying within just a few minutes. Even with all we can do and what can be done at the hospital to correct these problems, if you don’t keep the brain alive, someone may just survive to be on a ventilator, in a vegetative state.”

Sean’s story had a happy ending. He was taken to ValleyCare Medical Center, where he was diagnosed with Wolff-Parkinson-White Syndrome, which means an extra electrical pathway in his heart. He’d noticed symptoms in high school when he didn’t cool down during sports as others did. He was transferred to Mt. Diablo Medical Center where doctors operated to correct the condition.

“When the doctors came out, they were ecstatic,” reported Felker. “They said, ‘He is not just 50 percent better. Now he has a heart like yours or mine.'”

Sean was back at UC Santa Barbara 22 days later. His dad is signing up for another CPR class, although he has taken it about four times over his 23 years at the Lab.

Not only did he return to UCSB 22 days later, but four years later he graduated top of his class in the entire college of engineering…even with all that brain damage 🙂 Also, two facts the article didn’t mention are that Sean was defibrillated five times before a pulse was detected, and spent the subsequent four days in a coma.

Sean and his younger brothers, 3 weeks after his heart stopped. Amazing!

It’s an emotional day for me today as I reflect on how drastically different my life would be without Sean. The outcome would have been so different if he had been alone or with someone who didn’t know CPR. He is my very best friend and God’s greatest gift to me (aside from salvation of course). I’m grappling with words to fully describe how amazing he is, and how thankful I am for him. I truly believe he is the greatest husband and father, and I respect him so much. I come from a long line of broken relationships/divorce, and I will be the first generation to break that cycle, as we are both steadfastly committed to our marriage and faith. Equally as exciting, Caleb+ will be the first in my line to experience a peaceful home in which their parents love God and each other.

Personally, I don’t know anyone who better exemplifies the fruit of the spirit – anyone close to Sean knows he is so full of love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, and self-control. He daily lives out Ephesians 5:25 with great humility – “Husbands, love your wives, as Christ loved the church and gave himself up for her.” For evidence of this, just read my series about my pregnancy with Caleb, and you will know exactly what I mean! I was once told that I hit the “jackpot” with Sean, and it’s true, I did 😉

Thank you, God, for saving my husband in more ways than one. His life has impacted so many, and my heart overflows with joy and gratitude today for your graciousness in allowing him to stay.