My name is Lisa and I am blessed not only to be the partner of another person with Moebius Syndrome, but to also be the mother of the first baby born to two people with Moebius. Kevin Smant and I met briefly in 2002 at the MSF conference near Chicago, Ill. We corresponded a little, but did not meet again until the next conference in my home state, Texas in 2004. Kevin and I really hit it off and discovered we had a lot more in common than just Moebius Syndrome.
Fast forward to 2007 when I discovered I was pregnant. Two years before I spoke to my gynecologist about having children with Kevin and she spoke to a geneticist friend on my behalf who said that the probability of us having a child with Moebius was very unlikely.
The geneticist gave us hope, but we all know when dealing with a rare condition like Moebius that not many truly know or can predict what will happen.
When I became pregnant, Kevin and I were never really concerned with our baby having or not having Moebius. Of course we wanted and prayed for the best, but we figured that if our child did have Moebius, who would be better parents to deal with that kind of situation? I believe our parents were much more worried about the baby, perhaps because they knew what issues they had faced as parents and did not want us to go through those struggles again.
My pregnancy was relatively normal, though I did develop asthma. Pregnant women are not encouraged to use inhalers but instead a nebulizer which is a lot more time consuming. Several times a day I would hook myself up to receive breathing treatments. Since I do not have full mouth closure, I also used a mask to breath in the medicine better.
At 20 weeks I visited a specialist for an ultrasound, recommended by our gynecologist.
Their equipment was much more advanced than a sonogram machine that a regular gynecologist might have. The doctor was able to look at all of the baby’s organs and bone structure. At this appointment, we found out that we were having a boy who seemed healthy in every way! The baby’s organs were all in great health and though Moebius does not have any defining indicators, the baby did not have a cleft lip or anything different about his head structure that would cause concern. Of course, we were all very excited! I remember when I checked out of the doctor’s office, the nurses were surprised that I did not need a follow up appointment!
The doctor’s diagnosis came true on Monday February 11, 2008 when our beautiful son was born without Moebius. I remember that both Kevin and I watched him and his eyes carefully after he was born; did they show any sign of Moebius? Could he move them? Could he suck when he took milk? The answer was yes on both counts. He was healthy but was born with a small air pocket in his lung which made him breathe faster than normal. This healed on its own and did not require any procedures or medications. He did however spend the first few days of his life in the hospital nursery.
We brought Ethan home two days later. Ethan is now 17 months and is truly a blessing to our life. He is happy, active and beautiful. Dr. Jabs theorized in 2008 at the conference in New Jersey that Ethan did not receive the Moebius gene from either one of us. I look forward to hearing about future Moebius related genetic research.