Immediately after Gina’s daughter, Larkin, was born, Gina could tell she had Down syndrome. She stayed in the NICU for a long time because of respiratory issues and not being able to suck to eat. The nurses in the NICU suggested she give Larkin a G-tube so she could become stronger and go home. Larkin’s parents decided that was the best option and did the surgery. Shortly after, they were able to take her home.
New Born with Down Syndrome Condition Worsened at Home
“She was home for 11 days…it was the most stressful 11 days of my life,” said Gina. During this time Larkin was constantly aspirating and her skin color gradually turning more and more “dusty.” After seeing Larkin’s skin color, she was rushed back into the NICU, an uncommon practice for babies that have been discharged from the NICU. Within a few days, she coded and had to be intubated.
“When the neurologist came in, it was heart-breaking because he said he suspected Spinal Muscular Atrophy,” said Gina. When we asked what that was, he told us not to worry about it until they got the test results back. When they got home, Gina Googled SMA and broke down. “What I read was that it was the number one genetic killer of age two and under,” said Gina. Over the next couple of weeks, Gina and her husband researched their options in case Larkin did test positive for SMA.
At 10 weeks old, Larkin was diagnosed with SMA Type 1; the most severe type. Larkin had trach surgery and has been on a ventilator ever since. Larkin is now twelve years old and is the only known person to have lived with both Down syndrome and SMA. “It has been a roller coaster, but well worth it,” said Gina.
Challenges and Joys of raising medically fragile child
Raising a special needs child brings many challenges and joys. “It’s very hard on your marriage, and it’s very hard on your family,” said Gina. She has four other children, three of them are older and self-sufficient but the last one, Colton, is only four years older than Larkin. He had to learn how to do a lot of things on his own, but it has benefited him in many ways. All of Larkin’s siblings are more compassionate and accepting of those who have disabilities, often being the first one to stick up for them.
Larkin and Gina’s dad have a special connection. The two of them also happen to share a birthday. There will be times when Larkin is sitting silently, not making any noises to Gina. But then she’ll see her grandpa and start talking, saying “aaa aaa.” Larkin has taught her extended family that being together is more important than material things.
Learning How to Work Around SMA Diagnosis
Taking care of a special needs child becomes even more difficult when they are hooked up to so many machines and they can’t easily leave. Nurses take care of Larkin while Gina is at work but as soon as she comes home and the nurses leave, she stays in Larkin’s room. Gina says, “It’s so easy to take care of her.” They will paint nails, read books, listen to music, watch TV, and other mommy-daughter things. At age four, Larkin lost her muscles to smile but Gina knows Larkin is happy because her eyes light up.
Larkin is happy the majority of the time and “rarely ever cries.” The only time she does is when there is a mucus build up in her lungs which requires suctioning. She signals to her parents when she needs suctioning before one of her machine’s alarms that something is wrong.
Since Larkin can’t really leave the house, Gina loves to introduce new things and experiences to her. For example, when Gina brought home a special video message from a Santa Claus at her work, Larkin was so happy. Seeing Larkin happy, brings joy and comfort to the family.
Parents of a child with special needs: We Need Each Other
After Gina gave birth to Larkin, she got an unexpected call from her doctor of eighteen years. He told her, “God knew that she needed you, and you needed her.” To this day, Gina truly believes that. There have been many times where Gina has literally saved Larkin’s life in the middle of the night. But Larkin has also saved Gina. “She’s made me so much stronger, more independent, more outgoing, and more bold…she is amazing.”