Birthday: November 22, 2002
See Kaston’s Family blog for updates on Kaston (opens in a new tab)
tricuspid atresia, including AV canal, hypoplastic right ventricle, pulmonary stenosis, cyanosis TA, ASD, VSD, HRHS
Read Kaston’s story and see what God has done for him and His family.
Kaston Lane Snyder was born on 11-22-02, in Amarillo, Texas after an uncomplicated, normal pregnancy, weighing in at 7 lbs. and 21 inches long. Upon delivery, he was extremely blue & therefore immediately taken to the nursery for oxygen. After being there for a few hours, they transferred him to PICU for further evaluation. His pediatrician had his lungs checked out – everything looked good – so he further evaluated his heart. Upon consultation with the only pediatric cardiologist in Amarillo, Dr. Eugene Luckstead, it was discovered that Kaston had 2 holes in his heart and his tricuspid valve was just a solid wall of tissue, therefore restricting the bloodflow to his lungs. Lucky for Kaston, the holes in his heart were abnormally large, allowing sufficient oxygen levels to his body. He was released from the hospital at only 5 days old – no machines or meds!
His pediatrician advised us that it was best for him to be in a secluded surrounding to eliminate infection from other people. We were right in the middle of flu season along with all the other winter illnesses. I had a decent paying job that I loved, but had no one to watch Kaston & his sister, Korah. Korah was 3 1/2 when Kaston was born and until then, was watched by an older lady that had school aged grandchildren that lived with her (lots of germs nonetheless)! So after prayerful consideration and a total financial blessing from God, I quit my wonderful job of 6 1/2 years (mind you, I’m only 28)! I have to say that I believe that decision was the hardest decision of my life.
Kaston had a great first winter with only small infections, requiring no hospitalization. His pediatrician, Dr. Young kept up with his every movement and treated him like he was one of his own. He is a very devout Christian man, even singing in a local Christian “barbershop” group that competes in our area! He is known throughout the medical community as a genius. He is the father of 4 girls and is definitely a family man! He is very personable & I don’t know what we would have ever done without all the support he has given our family through this time in our lives! He is actually the one that sat us down at the hospital to tell us that there was something terribly wrong with our baby. But it helped coming from someone that we already knew & had a previous relationship with (also Korah’s pediatrician).
Kaston began to show signs of heart failure around March, so we began to prepare for our journey to Dallas (about 6 hours from where we live) for his first open-heart surgery. We had nowhere to stay while we were there and were needing to plan to be there for about 2 to 3 weeks. By this time, we had figured out that we didn’t qualify for any financial assistance from any agency (my husband is a police officer and makes $49.50 too much to qualify for disability!) so we just figured we’d live off of our credit cards. But, I’m sure you know that God always provides! Between my old co-workers, the police dept., and other donations from friends & family members, we were given almost $4,000 to help out with expenses!
Kaston had his 1st heart cath. in Dallas in April ’03 (age 5 months) & it was determined that he would need the Bi-directional Glenn Shunt. So, we headed back to Children’s Medical Center of Dallas at the end of May (still no meds, no machines) for his 1st open-heart surgery. Dr. Hisashi Nikaidoh (a mid-70’s Japanese man) was his surgeon. Also a remarkable gift from the Lord. He and his entire staff pray before each surgery. If you don’t pray, you’re not on his staff! Things went well, with the exception of a paralyzed diaphragm, which caused the upper lobe of his right lung to collapse, bringing his O2 stats down to the high 40’s, lower 50s. It was touch & go for a while, but everyone was very reassuring. At one point, he was in the mid-40’s and so Bob & I prayed over him & anointed him with oil. We left him for about an hour, and when we got back, his nurse asked us what we did to him because as soon as we left, he went up to almost 60! I just told her that it was God that touched him because we had prayed over him!
He was in ICU for 7 days, and was released from the hospital after only 10 days total! Bob & I were so impressed with the staff at Children’s; everyone from the cleaning staff to the physicians were the most helpful and friendly people. We did not have one bad experience. We just figured that we had God’s favor!
Our family loves to go camping and be in the outdoors and Kaston was able to go camping only 2 weeks after surgery. He has had a remarkable recovery and has not been behind developmentally at all since his surgery! He is a normal, very active 14-month old little boy!
Our daughter, Korah, (now 4 1/2) has adjusted well and is a beautiful little girl. She is very independent and has a very free spirit inside of her. She plays “doctor” all the time and says that she wants to be a kid heart doctor to help the kids like her ‘bub’ when she grows up.
Kaston still goes to the PC regularly and is only on 2 meds (digoxin & baby aspirin). We still go to the pediatrician once a month to get the synagis vaccination (for RSV). Although, we usually are there 4 or 5 times a month for illness this winter. He’s been pretty sick the last few months. He was in the hospital for dehydration in October. And since then he’s had strep, the flu, bronchitis, 2 ear infections, about 4 nose infections, hand-foot-mouth disease, diarrhea, and runs fever about once a week for whatever reason. But he’s actually been very lucky to not have had anything really severe. Dr. Young keeps close tabs on him. The only bad part is that every time he’s on an antibiotic, he gets horrible diarrhea and we have to watch him really close for dehydration. But I really can’t complain; things could be oh so much worse.
His next surgery (the Fontan) is not currently scheduled, but we have been advised it could be anywhere from the age of 18 months to 3 1/2 years. We’ll know it’s time when he begins to go in congestive heart failure again; so I guess it’s just hurry up & wait!
Kaston has been so blessed by his medical team that I can’t even begin to tell you how important they have been in his life! I think every dr. and nurse that has taken care of him is God-fearing and I know each of them pray for him. I believe that God has healed him through the hands of his wonderful doctors & nurses.
I think every family goes through “Why us?”, but we can’t question God, just realize that everything happens for a reason. We’re coming to see that it’s not all that bad and it’s just made us rely on God much more in our lives. He really let us know the hard way that we’re not in control of our future. When you’re young and have your full life in front of you, you have this picture of how things are going to be, but in a moments notice, the next 40 years of your life has been drastically changed. Thankfully, we’ve got the Lord to lean on and help us through the tough times. I just don’t see how non-Christians get through those tough times. People are astounded at how calm and collected we are with Kaston’s health situation, but I’m always quick to remind them that we have the Peace of God upon us. We both feel that this has been a great testimony to others and God only knows what it will bring for our children’s lives.
Thank you for letting me share our son’s story with you. I only pray that others realize that there is a peace out there that only comes by having the Lord Jesus in their lives.
Jamie and Bob Snyder