Jordan’s Story So Far

by Danielle Shaw

“Mental retardation, heart problems, and die before age 1.” That’s what a doctor I had never seen before told me within a half hour of my son Jordan’s birth. She thought he had trisomy 18, a condition that is considered “incompatible with life,” but she was totally clueless about the condition he does have, sacral agenesis/caudal regression syndrome (SA/CRS).

When I was pregnant, I had a lot of bleeding for six weeks in the first trimester. So, they gave me extra ultrasounds to see what was going on. I had six ultrasounds, but they did not detect anything strange with him, just the bleeding, which eventually stopped. However, when I was in labor, they thought he was in the breech position, so they did another ultrasound to verify it. The technician commented that his femurs looked too short for the rest of his body. I didn’t know what that meant at the time, but I soon would.

Jordan was taken away to another hospital about 40 miles away from where I was. That was a very hard time because I needed to be near him, but I was recovering from the c–section. When I finally made it over to his hospital to see him in the NICU, he looked so healthy and strong among all the tiny premature babies. But there was apparently something strange going on with his legs and feet. After a few days of testing, the neonatologist told us that they suspected Jordan had SA/CRS. They gave us a list of eight things that were “wrong” with our new baby — clubfeet, dislocated knee, missing part of the sacrum, ear tags (extra skin around his ears — they kind of looked like little Martian antennae coming out from the sides of his ears!), even a cyst on the bridge of his nose (unrelated to SA/CRS as far as we know), and so on.

The first few months of his life were very hard as we rushed to set up medical appointments and find out more information about this condition we had no knowledge of. Right away, we saw an orthopedic surgeon, who put the first casts on Jordan’s feet when he was only 9 days old. Jordan also started physical therapy when he was only about 2 weeks old! Looking back, I’m shocked that we were able to get all this done so quickly without any knowledge of his condition before he was born!

We also saw a urologist, who said Jordan was stable for the time being, but they started talking to us about possible procedures in the future and about catheterizing him, which we were terrified of. We saw a neurosurgeon, who had an MRI done of Jordan’s spine and brain. We also saw an ENT for the cyst in his nose. That was scary because they were concerned that the cyst might lead all the way up to his brain, so he would be susceptible to getting meningitis. However, that wasn’t the case, so we went to a plastic surgeon to have it removed along with the ear tags. Jordan had his first surgery when he was 7 months old, which happened to be on my birthday. What a birthday present for me! They operated on his feet, then about six months later had to redo it along with surgery on his dislocated knee.

With all of this medical things happening, it was hard for me to enjoy Jordan’s first year, and I was always thinking of that “die before age 1” statement I’d heard the day he was born. I didn’t realize it at the time, but I dressed him in “man” clothes such as little suits, as if I was trying to make him grow up and not be anticipating that 1–year “deadline.” However, he did make it to his first birthday and beyond and is now nearly 9 years old.

I remember a few turning points. When Jordan was just a few months old, he let out his first really big, real laugh during an appointment with the orthopedic surgeon. That made me feel like maybe we could get through this. Then I remember when he was about 1 year old, we were sitting at the table eating lunch, and he was very into the French fries he was eating. I felt for the first time since he was born that this was just a “normal,” regular day — and a normal, regular life.

A few months before his second birthday, Jordan started walking with a walker, which was very hard work for him and for us. As a baby, he always moved both legs together when he was lying on his back. We would move his legs back and forth for him as if he was taking steps to get him used to that feeling. When he was learning to use the walker, we also moved his legs for him to help him take steps. He finally figured it out, but it was very hard for him at first, and I was very upset with how much effort it took him. But soon he was running all around with the walker, pushing up on his arms, swinging from the walker and doing tricks, and nearly worrying me to death in the process.

He learned to use forearm crutches about six months later but wasn’t that interested in them yet and used his walker all throughout preschool. But in kindergarten, he started to use the crutches 100% of the time, and he got so good with them. He climbs up on playground equipment, plays on soccer and baseball teams for kids with disabilities, is getting really good at swimming, and is just generally very active.

Jordan is now about to finish third grade, and he is just a regular — yet wonderful, of course — kid. He loves superheroes, playing with his cousins, video games, and writing books. He is almost always working on a new book. He usually writes about superheroes, and he also draws the pictures to go along with the stories. Around the house we have just dozens of the books he’s written! He is in an acting group and has taken violin and drum lessons. He is very well rounded. His crutches are just part of him and part of what makes him Jordan.

So many things scared me in the beginning — that he’d be made fun of, that he wouldn’t have any friends, that he’d be in pain all the time and have a horrible life. None of these things came true. He has some great friends, and he is very healthy and happy. This whole thing has really made me see what is important in life — family, friends, fun, good health — and has helped me to cherish the “little things.” It turns out they aren’t little things after all.

The International Sacral Agenesis/Caudal Regression Association is a 501(c)(3) organization.

All content copyright © 2013, International Sacral Agenesis/Caudal Regression Association.
Site design by dccSites.
Responsive CSS by Responsive Grid System

Privacy policy