Gideon the Brave
Start: Jan 17, 2020 - End: Apr 30, 2020
When the angel of the Lord appeared to Gideon, he said, “The Lord is with you, mighty warrior”
Hi, we’re the Scheutzow family. I’m Jordan, my wife is Michelle and together we have 4 sweet kids. They are Raegan; age 5, Harper; age 4, Margaux; age 2; and our newest addition and first son Gideon who is 8 weeks old.
Gideon Abel Scheutzow was born November 16, 2019 at home, without complication and looked as handsome as could be. He even shares a birthday with Margaux! Pregnancy had been uncomplicated for Michelle with normal test results and ultrasounds. Just 24 hours after birth we had routine newborn checks and found out that something wasn’t right, we were convinced that it had to be a mistake. His oxygen saturation was very low, despite looking like a beautifully normal baby. We took him to our nearest hospital in Winchester, VA to have him looked at. After arriving in the NICU and having some further tests, it was found that he had a very serious and uncommon series of heart defects. It was the very first time we had ever heard of “Tetralogy of Fallot with MAPCAS”.
We were transferred to Inova Fairfax Hospital in Fairfax, VA where he underwent extensive diagnostic imaging, was intubated twice, and fought each day for stability in his vital signs. We found out there that, in addition to the congenital heart defect, he also has a deletion of part of his 22nd chromosome, called DiGeorge syndrome. His heart and anatomy are very complex. Due to how complicated and extensive his condition is, we were referred to Dr. Frank Hanley at Stanford Children’s Hospital in Palo Alto, CA. He has spent his career focusing on these rare and complex cases. He is the only surgeon in the country who performs the surgery Gideon needs. Our first thought was “how on earth are we going to do this”…After two weeks at Fairfax Hospital, it became emergent that Gideon would need surgery and we’d need to get to California ASAP. Gideon and I boarded his first flight on a small Cesna, the morning after Thanksgiving and flew all the way across the country. Michelle and three big sisters flew commercially to meet us.
After the first few days, the medical team was able to stabilize his vital signs and formulate the first steps of his plan. What he needed first was to increase blood flow to his lungs, this was achieved by a temporary vessel placed between his aorta and pulmonary artery. This would enable him to grow to a size where it is safer to perform a full repair surgery correcting all 5 of his heart defects. He had his first open heart surgery on December 2nd at just 2 and a half weeks of age. The surgery seemed like it was successful but 3 hours post procedure he went into cardiac arrest as Michelle and I were standing just feet away. He was resuscitated and placed on ECMO to do the work of his heart and lungs. A revision was done to the initial surgery to balance the blood flow between his lungs and his body and he worked hard each day to then get off the bypass machine, and start breathing on his own.
The goal was to give him time to grow and for us all to go home for a few months then return this summer for the full repair surgery. Unfortunately, his heart is still working too hard and beating too quickly. His medical team has tried everything to support his heart and lungs in non-surgical ways to give him the time to grow. He is burning more calories than we can give him, resulting in the inability to grow or gain weight. Gideon has only gained 400 grams over his entire 8 weeks of life. (A gram is about the weight of a paper clip) The plan now is to do his complete repair in the near future instead of this summer. His doctors have given us an estimated timeline of being here at the very least another 3-4 months. We have already been in the hospital for 2 months.
Our biggest expenses here are housing where we’re spending 4-6 thousand dollars per month and a rental van that we can use to transport us and the kids. We normally try to be very frugal people and have exhausted all options looking for cheaper or alternative housing. The Ronald McDonald house has not been able to fit us. We’ve used insurance, our social worker and even a travel agent looking for options. We are so grateful for your support and are trying to use this money wisely to cover the unexpected cost of living away from our home for 6 months. The most important thing is for us all to be together, keeping each other strong for Gideon. We love and appreciate your support and we hope that this can be a tangible way for you to connect with Gideon’s story. With your help, we will be able to take Gideon home with a healthy heart!
Fund Leader: Jordan Scheutzow
Fund Type: Medical Causes