I was twenty three years old and four months pregnant when my blood work came back bad. I was told to get right in to see a perinatologist. After receiving some genetic counseling followed by an ultrasound, my husband and I discovered we were going to be parents to a baby girl and that she had an omphalocele (her intestines were in a sac on the outside of her body). We were told that her chances of having more birth defects were high and that we should consider terminating the pregnancy, which wasn’t an option for us. We loved her so much already.

We spent the next few months getting a lot of ultrasounds and preparing for parenthood. This would be our first child. At thirty two weeks into the pregnancy I developed preeclampsia and was air lifted to the hospital in Phoenix where my daughter would be born four days later. Two days after arriving at the hospital, during an ultrasound, it was discovered that my daughter also had Beckwith Weidemann Syndrome. They could tell by her large protruding tongue (macroglossia), her large size (macrosomia), and the omphalocele. Two days later, Alexandra was born weighing in at 7lbs 8oz. She was not breathing on her own and had to be put on an oscillating ventilator. She had surgery done the day she was born to repair the omphalocele. The surgeon did a beautiful job giving her a “homemade” belly button. She battled some small complications including a heart murmur, hypoglycemia, and pneumonia. We were told that out of any syndrome your child could be born with, Beckwith Weidemann Syndrome would be a good one because things get better with time, instead of worse. We did not get to hold her until she was eleven days old. She spent forty nine days in the hospital before we got to finally bring her home. We brought her home with monitors and a feeding tube, because of her large tongue it was hard for her to eat by mouth. Each day got a little better though. We loved our daughter so much. We didn’t think there was anything we couldn’t overcome.

The years have gone by and Alex has done wonderful. She has had to get ultrasounds and blood work done every three months since she was born to look for tumors on her kidneys and liver. She will continue to be monitored until she is fourteen. The tests have all come out good so far. Her large tongue was causing her jaw and teeth to grow wrong, so we decided to get a consultation from a craniofacial surgeon and made the decision to have her tongue reduced. It was a tough surgery to have the sides, front, and middle of her tongue cut off. We knew there were pros and cons to the surgery. In the end the surgery was a success and her teeth and jaw immediately began to go back into place. Her face looks beautiful. She struggled with speech a little bit, but working with a therapist, overcame her troubles.

Alex is now nine years old and such a joy. She has had many obstacles to overcome since the day she was born. She has endured more pain in her young life than most people endure in a lifetime. But she has inspired so many people with her strength. She is smart, beautiful, good at sports, good at art, loving, and wonderful big sister to four little sisters now. We can’t imagine life without her. We feel so blessed that God has given us the gift of Alex to our family. She has taught us about life and what is important. We are so glad we chose life for her, and we know by looking in her smiling face each day that she is glad too.