mmy was a deeply hoped-for baby. We had been trying for months to get pregnant, going to doctors and doing tests. Just as we were about to start treatments, we got the positive test we had dreamed of.
I took care of myself the best I could eating well, exercising, and taking vitamins. I wanted to avoid the complications I had during my first pregnancy.
At 10 weeks, we did genetic testing. Since I was almost 40, the doctor suggested it. We waited anxiously for results. When they came back normal, we felt relieved. That is also when we learned we were having a little girl. Our son, Baron, was thrilled.
The next 10 weeks were full of joy. We picked names, planned the nursery, and dreamed of the future. But everything changed at our 20-week anatomy scan.
During the ultrasound, the tech kept looking at our baby’s head without saying a word. I immediately felt something was wrong. After a long wait, she told us the doctor would meet us upstairs.
The doctor said there was something unusual about Emmy’s skull. We were sent to a specialist the next day. That doctor—who had never met us—told us Emmy might have a type of dwarfism that would not let her survive and gave us abortion options. I was shocked and asked for another opinion.
We visited Seattle Children’s Hospital and talked to a doctor who helps with face and skull problems.
After looking at Emmy’s scans, he told us she likely had Pfeiffer Syndrome. It would be challenging, but she could live and have a good life. We felt hope again.
Pfeiffer Syndrome makes the bones in the head close too soon, which can affect how the face grows and make it hard to breathe.
Emmy’s case was severe. We spent the rest of the pregnancy preparing for her birth and lining up a team of doctors.
When Emmy was born, doctors took her right away to help her. Her eyes looked big, her head shape was different, and she had trouble breathing.
It was scary and emotional.
The first four months of her life were spent in the hospital. We had to make hard decisions, face risks, and hold on to faith. Emmy went through many surgeries and medical procedures. But she fought through it all.
Now she is 18 months old and doing better than anyone imagined. She still has challenges, but she is strong, determined, and deeply loved by her family and medical team.
Emmy may always look different, but she is beautiful. We hope that by sharing her journey, others will see past differences and simply say, “let us play.”
