What Sickle Cell Disease Is Like Through the Eyes of a Child

Emmy was born Jan. 4, 2010, with sickle cell disease. We met Emmy for the first time Jan. 27 when we officially adopted our precious daughter.

We knew when we decided to adopt Emmy she had tested positive on the newborn screening for sickle cell disease, along with several other genetic markers. We had no idea what we were getting in to; we knew nothing about sickle cell disease, and we had a lot to learn.

In her first three months, Emmy was hospitalized five times.

In her first three months, Emmy was hospitalized five times.

At 5 weeks old, only two short weeks after we met our daughter, Emmy was admitted to the Aflac Cancer & Blood Disorders Center at Children’s at Scottish Rite for fever. Little did we know that admission would be the first of many, many admissions over the next five years.

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Did you ever think sickle cell disease looked like this?

With sickle cell disease, fever can be a sign of a life-threatening bacterial infection. While that’s not typically the case, precautions have to be taken to be certain that it is not. Most of our admissions have been just that: days in the hospital making sure that she doesn’t have infection. She has also had numerous times where her spleen has swelled, indicating that she may be going into a spleen sequestration, which is common in sickle cell patients. A splenic sequestration can be life threatening. Due to the number of splenic sequestrations Emmy has had, she had her spleen removed last July.

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One of many hospital admissions.

Sickle cell has rocked our world. In March of 2013, Emmy experienced a life-threatening bout of acute chest syndrome. She was hospitalized for more than three weeks, two weeks of which were spent in the PICU. It is terrifying to watch your child become so sick so fast and be helpless to fix her. During that time, Emmy had a bacterial infection, consistent pain, acute chest syndrome, splenic sequestrations and more. It was by far the scariest admission to date, and it proved to us how scary sickle cell disease can be. Emmy literally went from playing one minute to the PICU the next … she changed on a dime.

After that admission, Emmy received chronic blood transfusions for seven months. The blood transfusions gave Emmy’s body a little break and allowed her lungs to heal completely from the acute chest.

Emmy on her way to a blood transfusion.

En route to receive a blood transfusion.

We had never been so thankful for blood. We are so grateful for every person who gives blood. Our sweet Emmy is a constant recipient and we are so thankful.

Emmy has also experienced pain crises, another common symptom of sickle cell anemia. It most often affects Emmy’s legs, eyes and head, and makes it hard for her to see, walk and play. It is disheartening to watch your child suffer from both chronic and acute pain and not be able to offer her relief. We try to offer relief at home with distraction, narcotics, heating pads, etc. If those don’t work, we head to the hospital for stronger medications and fluids.

Emmy often has pain crises in extreme weather changes, after swimming and traveling. Unfortunately, swimming is one of her favorite things to do. Last year, she was hospitalized for more than 10 days due to a pain crisis in all of her extremities after swimming. It was one of her worst pain crises to date. It’s heartbreaking to know one of her favorite things causes her so much pain.

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Enjoying the warm waters of Atlantis, courtesy of Make-a-Wish.

Emmy is so brave. One of the strongest and bravest 5-year-olds I know. She has been poked and prodded a lot over the last five years. Her little veins have not been cooperative, so Emmy had a port placed in her chest in July 2013. As her Mommy, it was so difficult to watch her go through these experiences – to see her in pain, to see her “sick eyes” when a fever would spike and to watch her writhe in discomfort every time an IV was attempted. We are so grateful for the port and the ability to have IV access with one poke.

The Lott family, a.k.a. “The Lott of Us.”

I wish we could fix it and make it all go away for her, wish she didn’t have sickle cell. As much as I wish we didn’t have to journey down this unpredictable road, I’m grateful our path led us to CHOA and the Aflac Cancer & Blood Disorders Center. They are our second home, our second family, and I cannot imagine walking this terrifying road without them.

The Aflac Cancer & Blood Disorders Center of Children’s Healthcare of Atlanta offers the largest comprehensive pediatric sickle cell disease program in the country, serving more than 1,700 children with sickle cell disease at three sites in metro Atlanta.