Mom of Triplets Had 2 Diagnosed With Cerebral Palsy, Had Spine Surgery

Oct 14, 2023

This as-told-to essay is based on a conversation with Nathalia Jaramillo. The following has been edited for length and clarity.

When a doctor pointed out three babies on an ultrasound screen, my whole life changed. My triplets — Ricardo, Santiago, and Elena — were born at 30 weeks and three days. Because they were so premature, they needed to go to the NICU. Santiago needed the most care: he had hydrocephalus, a condition where fluid builds up within the brain, and a brain bleed.

Ricardo was the biggest of the babies and seemed to be the healthiest. I didn't know then that he had many risk factors for cerebral palsy, or CP, including being born as the result of fertility treatments, being delivered before 30 weeks, and being a multiple. Despite starting their lives in very different states, my boys would share the same diagnosis and treatment — although it would take us years to realize.

Doctors warned me that Santiago might have cerebral palsy, a neurological condition that impacts a person's ability to control their muscles. CP isn't diagnosed until about 2 years old, but Santiago qualified for early interventions at our home because he had developmental delays.

When the triplets were about 6 months old, the therapist who visited our home asked if she could examine Ricardo. I didn't think anything of it and said of course. She looked at Ricardo's legs, then asked if she could bring her boss to see him. The boss confirmed that Ricardo had delays too, and he also qualified for the early intervention his brother was getting.

We went to see a neurologist, who confirmed that both boys had CP. The doctor was incredibly honest, and although this diagnosis was hard to hear, I appreciated that he was straightforward. As a parent, you don't want someone to sugarcoat. You want to know what challenges your family faces.

Eventually, we learned that the boys had spastic cerebral palsy, which causes stiff or rigid muscles. Both boys could both use their hands, and Ricardo could sit up, but neither could walk like their sister.

My husband and I were constantly reading and researching anything that could help Ricardo and Santiago. In Dallas, we found a neurologist who has CP herself. She thought both boys, who were now 4, would be good candidates for selective dorsal rhizotomy (SDR), a type of spinal surgery where nerves in the spinal cord are cut in order to reduce muscle tightness.

The surgery was only available at Memorial Hermann Hospital in Houston, more than three hours from our home, but we made an appointment as soon as we could. There, Dr. Manish Shah explained that the real benefit of SDR was that it could help the boys avoid future surgeries as they grow. But it could also give the boys the ability to walk. Even if they needed a walker, I would be thrilled with that result.

Dr. Shah recommended we do both procedures at once. The surgery itself only takes two hours, but children need up to a year of intensive rehab to get the best results. It would be hard, but then we would be done, and the boys could recover together, Dr. Shah told me.

I thought that idea was crazy. I couldn't imagine nursing Ricardo and Santiago through their recovery, plus taking care of Elena at home. But I decided to follow the doctor's suggestion. Both my sons went into operating rooms.

The surgeries went well, but the boys were in the hospital for six weeks. My parents and sister flew in to help look after Elena at home while my husband and I focused on the boys in the hospital. Sometimes the boys did therapy together, but if one refused to do something, his brother soon refused too. Instead, we let their therapy sessions overlap for a few minutes so that they could play.

After going through the stress of a long hospitalization once, I couldn't imagine doing it again. I was so glad that the boys had surgery on the same day.

Having one child with a disability is a huge challenge. Having two — plus another child at home — is really stressful. Luckily, I have my family to help when I have to divide my time and attention between the triplets.

The financial toll is harder to divide and conquer. Figuring out insurance coverage for the boys feels like a full-time job. This summer, we're spending time with my husband's family in Mexico, where the boys can get care that's much more affordable than in the US. Ricardo and Santiago are in therapy for three and a half hours every day, Monday through Saturday.

The hard work is paying off. Ricardo can now walk so quickly with his walker — he's practically running. Santiago can take a few steps, but he gets tired much more easily than his brother, so he prefers the wheelchair. All three of the triplets love to visit the park and the ice cream shop or swim in the pool. That's where I really see the boys become free.