Parenting with a Spinal Cord Injury

An Interview With Scott Chesney About Fathering Children After Paralysis

Scott and his wife Pratiksha with daughter Nia , age 10, and son Ray, age 8.

How did you become paralyzed and what is your level of injury?
On December 28, 1985, I had a rare stroke in my spinal cord that was caused by a rare Congenital Arterial-Venous Malformation (AVM), leaving me paralyzed from T-7 downward. I have full use of my arms and hands.

Tell us how you met your wife. After your marriage, what was the process like when you decided to have children?
My wife and I met in 1997, just ten days before I left on my first of two trips around the world. I was speaking at the New Jersey Chapter of the American Physical Therapy Association’s Convention in Atlantic City, NJ. Pratiksha was a physical therapy student at UMDNJ at the time and decided to attend my lecture. I was tongue-tied up on stage as I saw this vision of beauty in the audience and finally regained my composure and started my talk. Within five minutes, Pratiksha tapped her friend on the shoulder and said, “I don’t know who that man is,but that is the man I am going to marry and spend the rest of my life with.” Exactly two years to the day that we met, we were married.

Based on my wife being a physical therapist and having worked with people with spinal cord injury and my being paralyzed for 12 years at that time, we both knew that we would probably need medical intervention if we were going to have our own children, but also did not rule out the possibility of having to adopt. Either way, we knew we wanted to have a family.

What kind of specialist did you contact? Were their referrals? Did you speak to other spinally injured individuals who had children to learn about fathering a child?
At the time, which was around the year 2000, the only organization that we had explored having our own family with in the beginning was the Miami Project to Cure Paralysis’ Male Fertility Program. Once we moved up north in New Jersey, we talked to my doctor at Kessler Institute for Rehabilitation, another urologist who had worked with people with fertility issues, and then our wonderful team at Reproductive Medical Associates (RMA).

Did you have to take tests? How long after the sperm was produced and an egg fertilized did you know that Pratiksha was pregnant?
Once it was determined that I had “enough healthy swimmers to impregnate the entire east coast,” as my doctor so eloquently shared with me, we realized that we would have to go the In-vitro Fertilization route. We were quite fortunate in that the two times we did In-Vitro we received positive news that we were pregnant. Our daughter, Nia, was born in 2002 and our son, Ray, was born in 2005. Again, we planned for the best news and prepared for the other news, which would have been wonderful as well; that we would have to adopt…something we still may do someday.

After the birth of your children, how did you find parenting?
Parenting with or without a disability is one of the most challenging jobs on earth, filled with sheer exhilaration and overwhelming frustration. Since my kids never knew me on my feet, there was never any kind of adjustment for them. They knew what I could do and what I could not do. They seemed to know this from a VERY early age.

I recall Nia being just a couple of weeks old and in her play pen in the living room. Pratiksha had just ventured outside to shovel snow that had just fallen. Within a few minutes, Nia began crying and while I could have easily hit the outside intercom and asked Pratiksha to come back in, I said to myself, “I can do this.” The playpen was on the floor so to reach down and get her would really be difficult because of my lack of trunk balance. There was no way I could lift her up with two hands and also support myself while bending over. So I held onto my wheelchair with one hand and with my free hand, I grabbed as much of her onesie in the chest area that I could. Before I began to lift her I said, “Nia, we gotta work together here. You have to keep your neck straight while I lift you, okay?” Yeah, I was talking to a two-week old. She appeared to know exactly what I was saying as she held her neck straight and looked right into my eyes. I lifted her up and out of the crib, onto my lap. What a feeling of relief, independence, and pride I had in that moment. My son and I had that same connection when he was born. Living with a disability causes you to become very creative to do many things in your life…including picking up your children!

Conceiving Children with SCI

Paralyzed men and women can become moms and dads.

Women who become paralyzed represent approximately 20 percent of all individuals with a spinal cord injury. The desire for many is at some point to be able to have children. Each situation is different and unique, but the process and approach to having a child is the same as an able bodied person.

First and foremost—that a child is desired. Emotional and physically stability are important to begin this process. Connecting to and speaking to a rehabilitation physician who is knowledgeable with the reproductive health concerns of women with SCI is essential. Finding an obstetrician who specializes in and has a full understanding of pregnancy for a paralyzed woman is the next step. The proper team of doctors will ensure that the pregnancy and delivery will be a good experience.