Our journey begins with finding out the big news: We were pregnant!. . . . again. After suffering a miscarriage on March 24th, 2010, naturally we were excited, frightened, anxious, worried, nervous. . . everything. We quickly shared the news with our friends and family. We saw our OB and received the expected due date of August 24th, 2011.
Things were going along as well as could be expected. We just wanted to get to that "magic date" where we would enter our second trimester and take a deep breath. We made it. Aside from morning sickness and any other symptom of pregnancy you could imagine, everything was looking good.
At our 20 week appointment we had a scheduled ultrasound before seeing our OB. We were holding our breaths. The question on our mind: "Is it a boy or a girl???" and there we had it! It's A Boy! The ultrasound technician went about taking all the proper measurements and looking at every part and piece of our little boy. Then it was over. We had some pictures and a DVD our our precious little boy. Then Josh asked the question, "So, everything looks good then?" and the answer. . . "I'm not allowed to say." We both knew at that point it wasn't good.
We went to our scheduled OB appointment. That's when we were told by our doctor that our baby boy showed signs of cleft lip and cleft palate. I remember saying "Of all the tings our baby could have, at least this is something that can be fixed." Questions were asked. "How soon can they fix this?", "Will he have mental disabilities?" and many more. We were assured that cleft lip and cleft palate were not associated with mental development. We were referred to a perinatalogist to confirm the cleft lip and palate. Our appointment was set. Two weeks away.
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| We named him Hunter John |
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| Hunter's profile 20 wk ultrasound |
After two weeks of questioning:
"Could they be mistaken?"
"If there was no mistake, how bad is it?"
"Maybe it's just his lip, and not his palate?"
Many, many questions, many tears, lots of worry. By the time it was time for our appointment with the perinatalogist we'd accepted that our baby had in fact had a cleft. We'd equipped ourselves with educational tools. We'd read stories and reviewed photos of other cleft affected families. We just needed to know. . . "how bad is it?" Nothing could have prepared us for what was coming next.
A student came in and began the ultrasound. She examined all of Hunter's parts and pieces. She examined his heart, kidneys, head, legs, toes, everything. . . except his face. We'd caught glimpses of what we thought were the cleft when his face quickly flashed on the screen, but then it was gone again. Then the "real" ultrasound technician came in and began examining Hunter. Apparently he was in the perfect position for her to examine his face. She began taking "sweeps" and producing 3D images of Hunter's face. There it was, a unilateral complete cleft lip on his right side. The perinatalogist came in and began examining Hunter. She confirmed that his palate was severely affected as well. She could not say one way or the other whether or not his soft palate was affected, this is something we will not know until he is born.
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| Hunter at 22 wk ultrasound 3D |
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| Hunter John 22wk ultrasound 3D |
Since Hunter wasn't opening his hands, the doctor suspected that Hunter had Trisomy 13 or Trisomy 18. Both are chromosomal disorders that severely mentally debilitate and may even cause death before or very shortly after birth. We had an amniocentesis done right away to test for the chromosomal disorders.
The doctor suspected these chromosomal disorders with her only evidence being that Hunter would not open his hands. We were overwhelmed. The thought that it went from "something we can fix" to something potentially fatal for our baby broke our hearts. Then on top of it all they stuck the biggest needle we'd ever seen right through my belly. It was almost too much to bear. Many tears were shed, and then. . . a realization. Hunter's hands were open in our 20 week ultrasound. Hunters hands were open in the beginning of the latest ultrasound. Something they probably didn't see because these images were presented when the student was performing the ultrasound. We later learned that the chromosomal disorders present with clenched fists where the fingers over-lap each other. A picture given to us by the perinatologist clearly shows Hunter's fingers are aligned perfectly side by side. We have also ruled out Van der Woude syndrome, which is the most common syndrome associated with cleft lip and palate.
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| These are Hunters Fingers |
We are also confident in ruling out Apert Syndrome, Aarskog Syndrome, Crouzon Syndrome, Goldenhar Syndrome, Hemifacial microsomia, Popliteal Pterygium Syndrome, Shprintzen Syndrome, Stickler Syndrome, and Treacher Collins Syndrome at this time. However, there are hundreds of syndromes that may present with cleft lip and palate, these are just among the more commonly known ones. We have no reason to believe that Hunter is mentally affected at this time.
(You can see Hunter waving his little fingers up next to his head about eight seconds into the video from the 20 week ultrasound)
