Amelia’s Story

Amelia doesn't let her cystic fibrosis diagnosis stop her from having funBy Lizzie Drake, Amelia’s mom

My daughter Amelia is 3 years old. She has curly blonde hair and blue eyes. She’s feisty and spunky. She’s always happy, loves life, and loves to play and sing songs. She loves to read and be outside, and she loves going to preschool.

Amelia also has cystic fibrosis (CF), a chronic, progressive lung condition. That means Amelia needs a lot of care and treatment so she can live a healthy life.

It’s a lot to handle, and having a child with CF can be overwhelming at times. But the incredible pulmonary medicine team at Connecticut Children’s Medical Center has been one of our main sources of support. These professionals have helped us be as successful as we possibly can at keeping Amelia healthy and happy.

The start of Amelia’s journey

Amelia was born premature with her twin sister. Her sister passed away from complications related to their premature birth when she was 2 months old.

Amelia was born in Texas and was in the neonatal intensive care unit (NICU) when she received her newborn screening for various genetic diseases. The results came back with an abnormal screening for CF, but she was too small to complete further diagnostic testing.

When Amelia was 6 months old, she was admitted to the hospital with a lung infection, and the doctors tested her at that time for CF. They did this with a sweat test, in which Amelia’s sweat was tested for levels of chloride. People with CF have higher chloride levels in their sweat than those who don’t have CF. The results showed that she had CF.

We started seeing a pediatric pulmonologist regularly in Texas. Then we moved to Connecticut when Amelia was 18 months old. We were referred to Connecticut Children’s because they, along with Hartford Hospital, operate the Central Connecticut Cystic Fibrosis Center.

The Connecticut Children’s pulmonary medicine team

The first time we met the team, it was great. We met the doctors; Deana Phillips, the social worker; Lisa, the dietitian; and R.B. Curtis, the coordinator of the pulmonary medicine department. We work closely with Dr. Melanie Sue Collins, the assistant director of the Central Connecticut Cystic Fibrosis Center.

Dr. Collins is realistic about the disease process of CF, but she also makes sure Amelia is able to live her life, rather than letting it be totally taken over by her disease, treatments and medicines. She works with us to find the right plan of care to keep Amelia as healthy as possible, and we work together to adjust that plan as needed along the way.

We see Dr. Collins every six to eight weeks or so — more than that when Amelia is sick. During those appointments, we also usually see Deana and Lisa. Deana helped us navigate the complexities of how Amelia can stay healthy when she goes to preschool and that everyone there is familiar with her care needs. Amelia has a feeding tube from her premature birth, and patients with CF can have trouble gaining weight, so Lisa helps ensure that Amelia’s getting enough calories so she can grow properly.

And, of course, none of Amelia’s care would be possible without R.B. She’s my go-to person at Connecticut Children’s. We need a lot of equipment and supplies to help care for Amelia at home, and R.B. makes sure we have what we need.

Amelia’s routine: Home life and care

Some kids might wake up and play with their toys before starting their day, but not Amelia. When she wakes up, she knows she has to start her breathing treatments. In the morning, she wears a vest that vibrates her chest to ensure there’s no mucus buildup in her lungs. That takes about 20 minutes. While she does that, Amelia also receives nebulizer treatments with various medications. The number of medications she needs depends on whether she’s healthy or sick that day, and these treatments last 30 to 45 minutes. We do this twice a day at least. If Amelia has a cold or some other illness, we’ll sometimes do three or four breathing treatments a day to try to keep her from having to be admitted to the hospital.

Amelia’s never known anything different than this routine, so she doesn’t complain about her treatments and therapies. It’s just part of a normal day for her. She’s definitely better about going to the doctor than most kids her age. She knows Dr. Collins and the rest of the pulmonary medicine team, and she knows when we go to her appointments that they’re going to listen to her chest, feel her belly, and look in her ears and nose.

I’m a nurse, and my husband, Ryan, is a doctor, so people often tell us Amelia is lucky to have parents with medical expertise. I would say we’re maybe a little more in tune with Amelia’s disease and what needs to be done, but we know anyone whose child has CF can learn what their child needs for care and treatment. Also, just because we work in the medical field doesn’t mean we feel any less frustrated or helpless at our daughter’s disease. Every family has its ups and downs when dealing with CF, and ours is no different in that regard.

Ongoing CF care and support

AmeliaIt’s hard for us to think about Amelia’s prognosis sometimes. CF is a progressive disease, so until researchers find a cure, her lungs will fail from it someday. It’s important to keep in mind, however, that there continue to be great advances in CF research, especially in the last 10 to 15 years, and people with the disease are living longer, fuller lives. Even so, it’s still tough to think about as a mom.

My husband and I don’t know what the future will hold for Amelia and her disease. We can’t predict what her life will be like as she gets older and moves to adulthood. These aren’t easy questions for us to ponder, and there aren’t any easy answers for us.

We haven’t talked with Amelia yet about her condition and what it means for her life. She’s too young to understand. But Deana at Connecticut Children’s has put us in touch with support groups and organizations that help families like ours. We’re part of the Cystic Fibrosis Foundation’s Connecticut chapter. Every year, we participate in the foundation’s Great Strides walk to raise funds for CF research and a cure .

And, of course, the Connecticut Children’s team is there for us every step of the way as part of our support system. I really feel the staff members care about how we’re doing as individuals and a family. We’ve had nothing but positive experiences with them.

Choose how you respond to CF

The single most important piece of advice I would share with any parent, child or family dealing with CF is this: You can choose to be happy. Your challenges or trials do not define your happiness. Amelia hasn’t lived what I would call a “normal” life compared to other little girls her age. But she loves life, and her days are full of laughter, singing and smiles. She brings joy to everyone around her. She is the perfect example that we can choose to be happy in spite of challenges we face in our lives.

I also know that, if you’re facing CF and you’re not sure where to turn for help, you’re in great hands at Connecticut Children’s. Whether this is the beginning of your journey or you’re moving from somewhere else like we did, I’m sure you feel overwhelmed, nervous and scared. We certainly did. But know that the pulmonary medicine team and the staff members we’ve interacted with at Connecticut Children’s are wonderful. They will always have the best interests of your child and family at the heart of everything they do.

If your child has CF, contact our pulmonary medicine team to learn how the Central Connecticut Cystic Fibrosis Center can help.

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