wolfhirschhorn.org

I thought I would post my husband’s perspective on WHS. I know we don’t have a lot of daddies that post and he wanted to share his side of Mia’s story!

“I’m Pregnant!”
Pausing for brief moment, I carefully freeze because I am sure we just discussed yesterday who was going to go in for the “routine procedure” that was going to prevent this from happening. Secretly, I am thankful I do not have to go in!
Misunderstanding. Weeks pass and the ultrasound technician gets a second opinion on something, not sure what. Oh wait, she is not sure there is a stomach…but she says on a brighter note it is a girl…and didn’t you say you were hoping for a girl???
Confusion. Happy it is a girl… but isn’t a stomach important? We are calm. We are positive. Everything is going to be fine. Nothing bad happens to us. Only to other people. When she grows bigger, they will see the stomach.
Anguish. Another appointment. Our “miracle” we are told by the specialist will be a “true miracle” if she actually survives the pregnancy.
Anger. We are asked many times and each time it shocks us even more… “Are you sure you want to keep this baby?” As if it were an old, damaged pair of shoes we should throw away because you can always buy another pair. “Yes, we are sure!”
Exhilarated. She enters the world on March 4, 2008 at three pounds eight ounces.
Fear. Not breathing…but I lie and tell my wife she is and follow the chaos out of the operating room so they can tie my wife’s tubes and sew her back up. Amelia is intubated for two hours but eventually she breathes on her own.
Relief. I can now tell my wife in recovery that she is ok. I will leave out most of what I just saw for another time.
Excited. Our first visitor arrives and while in the NICU, I am stopped before I can show off my princess and told, “Your daughter has Trisomy 21. We think. We are not sure. But she might..”
Confusion. Do I tell my wife or wait for the tests?
Certainty. “We are sure it is Wolf-Hirschhorn Syndrome.” The geneticist patted herself on the back. “I can’t believe I figured it out. It is so rare! I am a genius!”
Despair. Chrissy and I research it on google in the NICU. My heart stopped beating. Life expectancy-two to five years. Geneticist: “You will never meet another family that has a child with this syndrome.” We return to the hospital room. All I keep thinking is I will never get to walk her down the aisle for her wedding. I know. I am selfish but no less my dream is crushed.
Terror: After two weeks in the NICU, Mia catches a life threatening virus. When she is stable, she is transferred to CHOP.
Eager: After three weeks and two classes to teach us how to care for her and the NG tube, she can go home. We have one last meeting with her team of doctors.
Shock. There are only three kids in the whole world with the same chromosome deletion as Mia because her 4th chromosome has doubled, deleted and inverted itself. She will have to write her own book on what the future holds for her.
Patience: I learn a lot of this from Mia everyday. Life has such a different meaning to me now. She has connected us to many families with children who have the same syndrome. And we are lucky enough to meet regularly with six families when we were told we would never meet one.
Hope. It is all we need!