Aug. 4, 2005, was a day full of excitement and anticipation for my husband Kevin and me. This was the day we were to find out the sex of our unborn child. During our one-hour ultrasound we saw the hands, feet, head, stomach, and gender of our baby. We were overjoyed to find out that my husband’s prediction of a boy was correct.
However, our joy soon turned to concern and fear. The maternal fetal medicine doctor that had been following me since the beginning of my pregnancy, Dr. Mark Grant with the Center for Maternal and Fetal Medicine in Columbia, MO, noticed an abnormality on the ultrasound. Dr. Grant took his time with the ultrasound to be sure of his diagnosis. Our son was diagnosed with a unilateral cleft lip and palate in utero at 22 weeks gestation.
Upon hearing the news of our son’s cleft lip and palate, I immediately became nauseous and vomited. I don’t know what caused this reaction, but I am sure it was the way the baby was laying on my vena cava nerve because I had this reaction for every ultrasound when I was laying on my back. I was scared to death wondering if anything else was wrong with him and if he would be born with any other abnormalities. He was at an increased risk of other abnormalities due to me having a single vessel umbilical cord with the pregnancy. We were taken into another room with the genetic counselor to talk about additional tests that were available should we choose to pursue them.
When we reached the room, I immediately felt lightheaded and blacked out for a few seconds. I was given cold water and a cold washcloth to help refresh me. The rest of the time in the office was a blur to me. I remember the genetic counselor telling us what other possibilities could be wrong with our son. I also remember her telling us that we had the option of doing an amniocentesis to help rule out Down Syndrome, other mental retardation and developmental issues, and Trisomy 13, which could prove fatal to my baby.
Kevin and I went home and took time to absorb the emotions that go along with finding out that our first child would be born with a birth defect. We also knew we had some decisions to make regarding further testing. We had to outweigh the pros and the cons of doing an amniocentesis. On the pro side, we had the chance to find out what we needed to prepare for our child’s birth defect, and on the con side, we knew that this test could have a slight risk of miscarriage, in the addition to more bad news. We discussed the situation in-depth and decided to go ahead with the amniocentesis. I called my doctor and was fit in the same day, Aug. 10, at 10:30 a.m. for the test. The test itself did not hurt and thankfully, I had no side effects or pain from it. The most agonizing part was waiting for the test results. It would take 10 days for the results to come in.
The following Thursday night, my husband and I were sitting on the couch watching TV, and I remember breaking down to my husband. I start crying because I was afraid of what the amniocentesis results would show. Would our son be mentally retarded? Would he be born with a fatal disease? Would he ever look perfect? Did my previous complete molar pregnancy have any effect on this current pregnancy by causing a birth defect? I was scared of the unknown. As my husband sat and held me, he told me that no matter what, we were this child’s parents for a reason and we would be okay whatever the outcome was. I loved this baby more than anything and was prepared to do anything in my power to make sure he was given the best life possible, no matter what the outcome.
The next morning, Friday, at 9 a.m., we received a call from the genetic counselor who had amazing news for us. Our son was going to be perfectly fine! The amniocentesis results did not show any other chromosomal abnormalities! We were both so relieved to hear the results. We immediately began to research information on exactly what a cleft lip and palate are, and how it affects one’s life. We also did research to prepare ourselves on how to care for a child with this condition. We researched many Web sites on the Internet that proved very helpful, such as www.widesmiles.org and www.cleft.org.
We also began our search for a hospital in our home state of Missouri that would best suit our needs. Our genetic counselor, Christine Hake, did a wonderful job of providing us names for all hospitals in the St. Louis and Kansas City areas. We were drawn to SSM Cardinal Glennon Children’s Medical Center because of all the wonderful feedback we received from Debbie Watters, the clinical director for the Cleft Palate department. We were given a lot of useful information. We also received several phone calls from Debbie to follow up on any questions that we had. We also had learned of the advances in plastic surgery by Dr. Michael Carstens.
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