In 2007, we agreed to fund half of a pilot program to screen for SCID in the state of Wisconsin. Dawson Bornheimer was the state’s first infant to test positive for a severe T cell deficiency through the SCID newborn screening program on June 12, 2008. Doctors were able to pinpoint the genetic cause of his T cell deficiency and determined that he could be treated with a bone marrow transplant. He was the first baby to be cured as a result of the pilot program!
Today, Dawson is a healthy freshman in high school. In honor of Newborn Screening Awareness month, we are delighted to share our recent interview with Dawson and his mother Melissa Bornheimer, who is a fierce advocate for our cause.
1. Tell us about Dawson.
Dawson is a freshman in high school. He is an avid sport fan, loves to play games with his brothers, and participates in football, basketball, and track.
2. When was Dawson diagnosed? How long did it take to get treatment?
When Dawson was 12 Days old, I received a call from Dawson’s pediatrician telling me that he had failed a test on the newborn screening panel that was testing for SCID. We already had his baptism planned for that day, and when we got home from church, he spiked a fever, and we ended up in the hospital that evening. I think they did some bloodwork and we stayed in the hospital a few days and were released.
On the weekend of the Fourth of July, his bellybutton became extremely infected, and we ended up in the hospital again, for surgery this time. While there, we got the results of some bloodwork that was not very promising. They knew something was really wrong with his immune system but weren’t sure what exactly it was. After a 14 day stay, we were sent home.
In August we went to go see an immunologist at the Children’s Hospital of Wisconsin. They drew a lot of labs, and we came home the same day to wait for answers. The following day Dawson was rushed by ambulance back down to the Children’s Hospital and was admitted. He underwent surgery on his neck to release the pressure of an abscess that had formed and while he was in surgery the immunologist found us and told us that he had leukocyte adhesion deficiency and that his white blood cells did not move in his bloodstream. The plans for a bone marrow transplant were soon underway.
Dawson underwent 10 days in a row of chemo and received his new bone marrow on September 25, 2008. He was 3 ½ months old.
3. What was it like to find out the results of his SCID screening? How did you feel when he was cured?
When his pediatrician called me when he was 12 days old, I was absolutely devastated! Of course, I had never heard of SCID and when I looked it up the first article stated that most children do not live to see their first birthday. Here I was getting my baby ready for his baptism, and I felt like my world was crashing down around me.
When I found out he had to undergo a bone marrow transplant, I was very scared. We had many meetings with the doctors trying to figure out a plan that would best suit Dawson. His body was not able to heal properly from his two previous neck surgeries and belly button surgery, so they weren’t sure if he was going to be strong enough to handle the chemo. It was so scary. Looking at Dawson…he looked like a normal baby, but he was so sick on the inside. If it hadn’t been for this testing, he most likely would’ve passed away in his sleep and we never would’ve known why.
4. Does Dawson have to undergo any treatments or visit any specialists today?
Dawson is a happy, healthy teenager now. Besides his regular doctor visits, he has no long-term effects from the chemo or the transplant. He’s not on any medication and lives a quite normal life.
5. Do you have any advice for parents facing a SCID or similar diagnosis?
My advice to any parents going through this is to have faith in your doctors, lean on your families for advice and support and spend every second loving up that sweet baby of yours. It is certainly not an easy journey to be on, but our entire family and the small community we lived in raised us and up in prayer and supported us through this entire journey.
6. What do you wish more families knew about the newborn screening process?
I’m not going to lie, I did not know much about the newborn screening process after having my son Dawson. I knew they did a heel poke at the hospital when he was 24 hours old and that was all I knew.
I had the opportunity to tour the facility in Madison, Wisconsin where they do the newborn screening testing. I was amazed at all the scientists and doctors who work behind the scenes to make sure our babies are okay! Most parents go home with their baby not knowing that there is an entire process still going on to make sure that their baby is okay.
7. We’re approaching the 14th anniversary of Dawson’s bone marrow transplant. How do you feel reflecting on this important milestone?
On September 25 we will celebrate 14 years since Dawson’s transplant! Throughout this journey we have met many amazing people. Vicki and Fred Modell are the true heroes of Dawsons story. Their determination to help find a cure for babies born with immune deficiencies saved Dawson’s life.
In 2008 Wisconsin became the first state in the union to add the newborn screening test for SCID to the newborn panel. Vicki and Fred Modell made that happen! They are our heroes!
1. Are you enjoying your first year on the High School Football team? Do you like other sports?
Yes, it’s really fun to hang around the players and my friends and I play basketball and run track too.
2. What are your hobbies and interests outside of sports?
Playing video games with my friends and watching movies.
3. What do you know about your diagnosis story? Does it affect your life today?
I know that I got a fever the same day I got baptized, and I also know that I got two neck surgeries and a bellybutton surgery from an infection when I got my umbilical cord removed, but I don’t know much more. It doesn’t really affect my life today but sometimes it can in certain situations, like wondering if it would happen to me again.
4. What inspires you?
My parents inspire me since they helped me through it all, and I couldn’t imagine where I’d be without them.