ACPA Family Services

Cleft-Craniofacial Community Stories

Macy’s Story

I could have been one of those women on that TV show.  I had been so overwhelmed with work and caring for my ailing father that I ignored my own body and didn’t know I was pregnant.  Two weeks after learning I was pregnant, I went for my first doctor visit.  They decided to do an ultrasound, because I had no idea how far along I was.  I told my doctor, two maybe three months at the most, so when he ran the device over my belly, and it revealed a 28-week-old baby, my husband and I were in shock.

Five baby showers later, my due date came and went, and after laboring for more than 10 hours, my doctor said I needed an emergency C-section.  On July 30, 2010, we welcomed Macy to the world.  Before I could see her, still in the operating room, one of the surgical techs popped his head over the drape, his face hidden behind his mask, and congratulated my husband and I and told us that we had a healthy baby girl.  He said, “She has a cleft palate, but that can be fixed at around 9 months.”  I didn’t even know what that meant, and the first thing that popped in my head was that my baby was ugly.  I don’t know why, but I guess I thought maybe she had what I knew as a “hair lip,” and when I saw her, she was perfect.

The hospital did not really explain much to us about having a baby with a cleft palate.  One of my nurses scared me with her own horror stories about her son who was born with a cleft palate 30 years ago, but he also had Downs Syndrome.  I didn’t know what to think.  Macy had a weak suck, and they gave us special squeeze bottles to aid with feeding, but beyond that, they were mute.   At discharge, we were told to contact the craniofacial clinic at a children’s hospital about and hour and half away from where we live.  I don’t know that I even knew that the word “craniofacial” existed prior to then.

Home alone with a newborn and the Internet, I diagnosed my child with having Pierre Robin Syndrome.  She had a small chin and fit the profile of everything that I read.  My husband had already gone back to work, and I called him in tears after I had looked at dozens of pictures and read stories about babies born with teeth.  He told me to stay off the computer and that we would be fine.

At 10 days old, Macy’s diagnosis was confirmed at the children’s hospital, and her doctor told us that she would require surgery within the year to have a chance of having normal speech.  She passed her hearing test at birth, and based on her physical features, we were told that she had a very mild case of Pierre Robin. I felt so guilty and blamed myself for her defect as I didn’t have any prenatal care until my third trimester.  Both my husband and I are college graduate professionals, and it was truly embarrassing to me to have a child with a birth defect, not because she had a birth defect, but because I felt responsible.  Macy’s doctor assured us that I was not to blame, but I couldn’t help but think that I could have prevented it somehow and that people would think it was my fault.

Her palate repair surgery was June 9, 2011, and after a short 24-hour stay, Macy was allowed to come home.    She wouldn’t stand for wearing the “no-no’s” on her arms, the splits that were supposed to stop her from putting anything in her mouth.  She wasn’t quite ready for the sippy cup either, but her doctor insisted that she was not allowed to have a bottle or suck through a straw, because it might destroy the repair.  She came down with a cold within a week after her surgery, and the sneezing caused a small hole in her repair.  I was horrified to see it at her post-op appointment, but it miraculously closed up on its own within a few weeks.

When we learned last year that we were expecting again, I was referred to a perinatologist and had two level 2 ultrasounds out of concern that our first baby had a cleft palate.  We welcomed our second healthy baby, Madison, on October 8, 2012.  God blessed me with morning sickness two weeks after conception, so I got to experience being pregnant the entire 9 months, unlike the abbreviated pregnancy with Macy.

Macy is so loving and protective of her sister.  At 2 and half, she is a bright, witty, ball of energy who loves to sing and speaks to everyone.  Whether at the grocery store or at church, she never meets a stranger.  My mother is a retired school teacher and cares for the girls at home during the day, and she and Macy have school for hours each day, at Macy’s request.  They sing, read, and write, and I worry sometimes that they’ll be nothing for her to learn in kindergarten.

Ours has been quite the adventure, and though Macy still may have some procedures in her adolescent years to come, right now, she is a typical two and half year old who refuses to potty train.