Little Gabby was my sister-in-law’s second child. Steph was midway through her pregnancy when she was given a grim outlook. Gabby had no left kidney. Her right kidney was multi-cystic and dysplastic. Basically, she only had one small kidney that was covered in cysts. Despite a poor prognosis, Gabby was born alive and making urine.
I watched my brother, Josh, and Steph bring home a tiny baby who needed daily medications and interventions from specialists. From birth, it was clear that Gabby would one day need a kidney transplant. We all hoped and prayed that this day would not come soon.
I was unmarried and childless when Gabby was born. I wasn’t sure how to help or what to say. I prayed with her parents and tried to offer help through cleaning or watching their other child.
Time passed. Gabby was monitored closely by her team.
I got married. Gabby got more siblings. And I soon found myself pregnant.
My pregnancy and delivery was uneventful. Steph was one of the first to hold her new niece, Jaycee. Hours after delivery, things changed. Jaycee was transferred to another hospital to be admitted into the NICU.
I had an eerie feeling scrubbing into the NICU. Was this how Steph felt a few years ago? Did she feel helpless and worried? Moments later, I was the one receiving bad news about my child. Down syndrome and an AV canal heart defect would set Jaycee on a different course than expected. Soon, I would be taking home my child on several medications, being followed by several specialists, and understanding that an open heart surgery would be in her near future.
When I felt everything was spiraling out of control, I called Steph, who knew the stress and fears of taking care of a medically complex child.
More time passed. Gabby and Jaycee had battled more by first grade than most people do in their entire lives. Gabby continued to need medications and monitoring. She had to drink large amounts of water daily while urinary tract infections posed frequent problems. Finally, at age 6 she received the kidney transplant that was hoped to bring some positive change to her life.
Meanwhile, Jaycee had two open heart surgeries and two heart ablations. She battled asthma and began wearing c-pap at night for obstructive sleep apnea. Unplanned hospital admissions for respiratory related illnesses became expected.
As these two cousins had different issues come up, Steph and I both found ourselves visiting each other in the hospital or calling for updates. She watched my son when Jaycee was in the hospital for illnesses. I brought her kids chips and cupcakes to distract them while their parents were in the same situation with Gabby.
Just when you think the worst is over for your medically complex child, you find yourself in a precarious spot.
Gabby’s new kidney was severely stressed from repeated urinary tract infections. Previously unknown issues with her bladder were finally discovered as the culprit. The fix would be an extensive surgery to augment her bladder with a Mitrofanoff procedure. This meant a urine catheter would now be forever in Gabby’s life. After Gabby’s full recovery, the process with Make-A-Wish was started.
The happiness of the wish was short lived. Gabby’s body was rejecting her kidney. High doses of steroids given to save the kidney had adverse side effects. The first unexpected seizure frightened myself. Surely, it’s nothing serious? Over the years, I had unknowingly believed that as long as Gabby survived her medical complications then somehow Jaycee would survive too.
Gabby’s wish trip was put on hold as she started dialysis at home for 9-11 hours at night while her name was added back on the transplant list.
Meanwhile, Jaycee had a major, near death illness landing her in ICU for weeks on ventilator.
On day 1 of the illness, we were told we might want to call any family in to see her. Josh walked in the ICU that day encouraging me not to give up. He had sat in a room like this down the hall with Gabby not long ago. Like my brother, I walked out of that hospital with my daughter. She was battered from the illness, on many medications, and prescribed twice daily airway clearance with our new vest machine.
As things changed for our children, Steph and I talked about our homes needing an area for medical supplies. Gabby’s supplies for dialysis far exceeded my stash of bi-pap supplies, oxygen tubing, and monitor stickers. She and I swapped stories of balancing life while meeting our child’s needs.
Then as it seemed destined to happen at some point in our lives, our children were in the hospital at the same time. Gabby’s second kidney transplant took place on the same date as Jaycee’s second eye strabismus surgery. We were all in the same waiting area while our children were in surgery.
Gabby’s transplant was successful thanks to the family friend who donated a perfect match for her. Dialysis was over. She began to have more energy. And best of all, her wish process could be restarted.
While life eased up for Gabby, Jaycee found her way back into the ICU for another serious respiratory illness.
She teetered back and forth on the verge of needing a ventilator again. I was crushed thinking the last illness was an isolated incident that would never be repeated. It was then that a social worker discussed seeing if Jaycee would qualify for Make-A-Wish. This was the first time I gave it some serious thought because her future no longer seemed guaranteed.
Our families were blessed with trips from Make-A-Wish taken within one month from each other. This time, it was nice to know both girls experienced happiness instead of a hospital.
Watching the complications arise from my niece and my daughter’s lives, I have come to know the importance of support and hope. Support from someone who understands what you are going through is vital when you feel like you are all alone. Hope is essential in making it through those hard days when nothing good seems like it will ever come. I am thankful that from my family I have experienced support and have been given hope.
Evana is a pediatric speech-language pathologist working with children with special needs or delays. She is a wife, mother of two, and writer. You can read more of their story at her blog, A Special Purposed Life