During a 24-week ultrasound, Jessie and Nathan were told that their son, Ammon, had a heart condition as well as clubfoot in both feet. After they met with a specialist, it was determined he had Tetralogy of Fallot with an absent pulmonary valve. These two conditions together happen to six in one million babies. As the pregnancy progressed, more problems came up. After undergoing genetic testing, Ammon was diagnosed with DiGeorge syndrome and XYY before he was born. Not unexpectedly of course, despite all of this, he has enriched their lives and Ammon is a very content baby.
This Genetic Diagnosis Has a Lot of Unknowns
“We were really grateful that he had DiGeorge and XYY…he was still going to be here,” said Jessie. The biggest unknown wasn’t his genetic diagnosis, but his heart condition paired with the absent pulmonary valve. That’s what made him part of a daunting statistic.
There were so many questions they had, but no answers. What would his life be like, would he be in pain, or uncomfortable all the time? While in the womb, he could “breathe” fine and he was simply growing. All that would change once he was born. They were so afraid they would lose him at that point. “Eventually, I just learned to stop trying to control the situation and trust that everything would work out,” Nathan said.
Challenges and Blessings of Having a Baby with Special Needs
At seven months old, Ammon doesn’t recognize the differences between him and any other baby. “He only knows he’s a happy baby,” Nathan said. However, they know as he gets older, they will have to teach him about his condition. They will need to teach him to love his life the way it is, rather than dwell on the negative.
Jessie says the hardest part about caring for Ammon right now is not being able to pick him up and walk around. That simple thing is what moms do with their babies so they can get things done around the house. She, however, can’t do that because he uses a ventilator and there are tubes and cords everywhere. Jessie has had to let go of her expectations of how things “should” be, go with the flow, and accept their journey the way it is.
Jessie has friends whose babies passed away for whatever reason, and it makes her think how grateful she is to have Ammon alive. Even with the hardest things, Jessie says, “…he brings so much joy that it makes those things insignificant.”
In addition to bringing Jessie and Nathan so much happiness, Ammon has had a tremendous impact on his extended family. Ammon has “softened a lot of hearts” and has made everyone realize how important family really is. Jessie said, “…his birth alone helped mend relationships I didn’t see being mended for awhile.” It’s amazing how someone so little can make such an impact.
Parents Wouldn’t Change a Thing About Son with DiGeorge Syndrome
Jessie knows, her life will be different because of having a child with DiGeorge syndrome and that’s okay. There will be hard days and it is okay to have hard days. Jessie said, “I would not change a single thing about him because it has helped me grow so much.” Your child will bring with them their own blessings and spunk which will change your life.
Nathan says, “…the joys and happiness will definitely be there no matter how hard the struggle is.” For Nathan, whenever he sees Ammon smile, he knows everything will be okay and it keeps him going.