My wife and I were expecting our second child so we went to the doctor for an ultrasound. We were told we were going to have a girl. This was helpful because we’d been discussing girl and boy names on a daily basis. Now, we could just focus on girl names.
The technician was very professional and left to find a doctor. He came back a bit flustered and without a physician. He told us a doctor would probably call us soon. No one called. No big deal. We didn’t think much of it. The next scheduled appointment was three weeks away and we had the ultrasound pictures to look at until then.
I didn’t go to that next appointment because we expected a regular visit. However, the doctor told my wife that the ultrasound had been abnormal.
As the tears dropped from her face, the doctor explained that the ultrasound revealed that her spinal fluid had cysts. This could be an indication that the baby might have a serious chromosome disorder called trisomy 13, or Patau Syndrome. Basically, there is an extra 13th chromosome that can lead to severe developmental issues including irregular brain and organ development. Half of the children with the condition live to be one year old. Some 13 percent live to be 10 years old. It is a devastating condition and diagnosis for an unborn child and the parents.
However, at that point we didn’t have an official diagnosis. We just had an abnormal ultrasound. The ultrasound itself is not enough to make the diagnosis.
When my wife called me at work, I was undone. I wished I’d gone to the appointment. I’m not sure what value I would have added to the conversation, but at least I could’ve been there to hold my wife and comfort her as we digested the awful news.
When I’d looked at the ultrasound pictures there was text on it that read “cysts.” At the time, I had no reason to expect this was bad news. However, then I researched the disorder and viewed images online. It was devastating. I couldn’t think or concentrate on do anything at work or home.
My wife and I were angry. We had strong emotions and tried to figure out why the doctors didn’t want to tell us the bad news. We talked briefly about if we could even care for the baby. We agreed that we would go through the whole process and love the child as much as we could.
My wife looked up a new hospital and a new doctor. We had our records transferred. We were determined not to stay with a hospital that communicated so poorly with us.
We also researched online and learned that ultrasounds should be conducted on newer machines with higher resolution. The high resolution is used to measure the growth of individual organs. This can help the doctors determine if the organs are growing at the same rate or at different rates, indicating the disorder.
My wife was furious with the original hospital, but we got a referral and went to a facility with a high-resolution ultrasound. They took their time measuring every organ. They used friendly banter to help keep us calm. Then we were asked if we wanted to know the sex of the baby.
“We were already told we were having a girl,” my wife said.
“Well, I don’t know how they missed it, but you are definitely having a boy,” The doctor replied. So much for only discussing girl names.
The good news was that they didn’t find any evidence of cysts or Trisomy 13.
I bought a stuffed animal duck at the gift shop — for me. We had been through the craziest emotional rollercoaster expecting parents could go through.
The new hospital heard our story and did their best to communicate with us and answer all of our questions. They were willing to over-communicate if that would make us feel better about switching facilities. And the birthing process went faster than it did with our first child. I felt more experienced as a dad. We held our baby boy, grateful that he was healthy.
I wrote a letter to the first hospital to explain our decision to transfer to a different hospital. I never heard back.
We only imagined having a healthy baby to care for, and we were ready to give our child our all. The possibility of raising a child with a potentially fatal disorder challenged our sense of reality and our ability to work through stressful trials as a couple.
I don’t know what skills it would take to raise a child with a disability. But, when I briefly contemplated the possibility, I imagined that the only way to do it would be with deep love. And one thing is for sure, I have a newfound respect for parents of children with special needs.
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