wolfhirschhorn.org

Soliz and Camila are siblings. They were born 21 months apart with Wolf Hirschhorn Syndrome. They are also both “deafblind”, meaning they are both hearing impaired and visually impaired. They have lots in common in fact when we are on the go lots of people ask if they are twins. But they couldn’t be more different from one another: their personalities, their likes and dislikes, their strengths and weaknesses, their development physically and socially. Their differences compliment each other so we see them as “Yin & Yang”. Their spirits are intertwined. Even though they cannot speak, they communicate with each other through touch, body language, with their hands and in other ways you and I may not understand. It’s as if they have known each other beyond this world and they are meant to be on this earth together.

When Soliz was born our world turned upside down. He was born full term via emergency c-section weighing a whopping 4 pounds 3 ounces and stayed in the NICU for the first 8 days of his life. As his mom and dad, we saw nothing unusual or different about him. In fact, I know we saw a geneticist during our NICU stay but I cannot recall that they were doing any kind of formal genetic testing. So when we got the call on the eighth day it was a bit of a shock. The doctors told us our son was born with this rare genetic syndrome that we knew nothing about. The next many months were full of doctors appointments, therapy visits, learning new acronyms, long nights of pumping mama’s milk and long days of trying to figure out how to feed our son and keep him healthy. Our experience as parents was humbling, more challenging than we could have ever imagined and full of joy.

We celebrated Soliz’ first birthday with family, friends and food and a couple weeks later found out I was unexpectedly pregnant!! Imagining having another child to care for felt mind boggling at times. On the other hand we were thrilled that Soliz would have a sibling he could learn from, a sibling that would motivate him to hopefully learn to walk and talk someday, a sibling that could help care for him. My pregnancy with Camila was so different than it had been with Soliz. With Soliz I was worried about his size, his lack of movement, etc. With Camila I felt healthy and I felt like my baby was growing appropriately. We went in for an ultrasound and she looked great. We had planned to do an amnio that same day but my amniotic sac was fused, so they said to return in a couple weeks to do the procedure. We never returned. Although we had not yet done any genetic testing we decided the risk of miscarriage verses having another child with any genetic syndrome was equivalent. The baby inside me was meant to be here with us. I felt this so strongly and could not imagine making any other decision than to have here with us.

Camila was born at home. After 30 hours of grueling labor I pushed her out on an April morning. Soliz woke up from a nap just in time so got to meet her, as she was fresh out of the womb. I knew right away that my daughter also was born with the same rare genetic syndrome as her brother. I could tell by how tiny she was, her unusual hands and feet, the coloboma in her left iris. Then later that day we found out she had a cleft palate. As soon as our pediatrician saw her the next day he knew that she also was born with 4p-. He was shocked. He was one of the many who said to not worry, our chances of having other child with WHS was so rare, etc. As you might imagine, we wanted to know right away the true story of our genetic make up. So we got tested. We found out within a couple of weeks that my husband is a carrier. He has a translocation on his 4th and 21st chromosome. We also found out that his oldest son is also a carrier. It was relief to know the truth but also confirmed that the chances of having another child with 4p- would be high. So Camila would always be our “baby”.

Camila is a mover and a shaker. If Soliz turned our world upside down, Camila is the one who turned it right side up again. She has told us to get it together, to go deeper, to search further. The brave one’s have entered into our lives, while the frightened one’s have run away. Our world is Wolf Hirschhorn Syndrome. Our world is deafblindness. This is what we know. These are our children.