Harrison’s Story


I had a sonogram at 16 weeks of gestation, and the technician said our baby was perfect. At 18 weeks, a different technician said she couldn’t get the right images of our baby’s spine, heart, or face. Also, the baby’s leg measurements were small, and his legs were not moving. I was called to go back 2 weeks later, and a third sonographer said the same thing and wanted me to come back a week later. The same thing was assessed again, so she wanted to do a scan with the consultant the following week. At that appointment, the chief technician said she suspected an issue based on the previous scan, so she sent us to our women’s hospital.

At 24 weeks, the same issues appeared on the scan, but this time they called us into a side room and told us that they suspected sacral agenesis and heart issues. Two weeks later, we went back to the women’s hospital, and there were six consultants in the room. They asked if trainees could come in, and we said yes. They all explained who they were and why they were there. I felt like my belly was a goldfish bowl because they all took turns scanning. The heart doctor, the brain doctor, an orthopedist, a kidney doctor, a neurologist, and a pediatrician were all there, and it was so scary.

We were then taken into what I call the “bad news room.” They brought in a model of the spine and heart. By now we had a specialized nurse or two joining the group as well. They started at the top and worked their way down, explaining the suspected issues and the definite issues. They had us chat with a counselor, who explained our options. At this point, we hadn’t ruled out facial issues either. A week later, we had an MRI done, and because I’m so claustrophobic, this was an ordeal in itself.

At 28 weeks, we were back at the women’s hospital listening to the information about our little one, my little “dude,” and his chances in life. Because of multiple issues we had, they told me that my son might not survive birth. If he did, he might not leave the hospital but would probably die shortly after birth. My world crumbled. This was especially traumatic because three years previously, my first son passed away in the neonatal unit.

Another doc was more positive and said the heart issues could be fixed but that his legs were probably fused in a frog leg position. Different doctors all had different opinions, but almost all were negative. We were told we should terminate. “It’s best for mom,” or so they said. “Your boy won’t walk or crawl or even sit unaided. Your boy will have no quality of life at all. He will need amputations and round-the-clock care.” They told me to remember that I had other kids at home to consider, too.

Well, I found iSACRA, and that gave me hope. Everyone was amazing. I continued going to appointments, and at 30 weeks, I was told I should have a medical termination. I had a huge meltdown and made it very clear for the millionth time that termination was not an option. This was so important to me because long ago I was told I couldn’t have kids naturally. All of my kids were conceived as a result of fertility medications. But this little boy got here all by himself. He was going strong in there, and they were not taking him away from me, especially after the death of my first son three years previously.

The doctors seamed cold even though they knew my history. My examination room was always filled with an army of curious doctors. By 35 weeks, my body was failing, and my little dude wasn’t doing so well, so I had my fifth C-section, and my little Harrison made his entrance to the world.

Now, three and a half years later, we have had even more issues discovered than just sacral agenesis/caudal regression syndrome. Nevertheless, Harrison is doing amazingly well in every way. Everything they said he wouldn’t do, he does. We walk into medical appointments (and there are many because we have a different doctors for each area of the body where there is some problem). In every case, the doctors look at him and are amazed. They often review the medical reports and continue to say that he should not be able to do what he does.

My little dude is tiny for his age. He walks, but he needs his wheelchair for longer distances. He has had some surgeries to protect kidneys and to make sure he gets enough nutrition, but when he is dressed, his shirt covers all of that. He just looks like any other happy, healthy little boy. There is no stopping him. He is so determined! He is a real credit to his ginger red hair!

During pregnancy and afterward, we were scared and surrounded by doubts, uncertainties, and negativity. I look at my son now and see an amazing little boy who has helped our whole family. None of my other kids say they “can’t” anymore because they know my little dude, Harrison, “can” (even though everyone else said he never would). My girls have commented to each other over the years about how clever and amazing he is. When they are scared, he isn’t even scared. They see how brave he is, and they try to be brave just like their brother Harrison.

Not everything has been a smooth ride. We’ve faced some issues, being in the UK, with getting him admitted to nursery school because the school administrators are afraid he will get hurt at school. We’ve had our share of surgeries. However, I am so happy that Harrison is a part of our family. He is a true gift, and I could not imagine life without him.

temp mail