See this cute little boy in the picture? That’s my Elijah! He’s a smart, determined, stubborn, impatient 14-month old.
Elijah James Samir Coffey was born on May 31. His initials EJS are my grandmother’s Earnesteen Johnson-Smith. One of his middle names, James, is my dad and grandfather’s names. My grandmother died on January 17, 2018, and my grandfather died on January 4, 2018. His name is in honor of both of my grandparents. Amir means prince, and I added the “S” for Smith.
There is never a dull day with my two-foot bear. Right now, everything is “mine” and “no, no, no.” Two words –send prayers.
You would never tell that EJ has Sickle Cell Disease SC or Hemoglobin SC. Now, for some of you reading this, the name may sound a little foreign. It’s unknown, but there are several types of sickle cell, the most common is Sickle Cell Disease SS or Hemoglobin SS.
There’s also Hemoglobin C and HbS beta-thalassemia and HbSD, HbSE, and HbSO, according to the Center for Disease Control. The last three, HbSD, HbSE, and HbSO, are rare.
According to the Center of Disease Control, people with Hemoglobin SC, “inherit a sickle cell gene (“S”) from one parent and the other parent a gene for an abnormal hemoglobin called “C.” Hemoglobin is a protein that allows red blood cells to carry oxygen to all parts of the body. This is usually a milder form of SCD.”
I never knew I had the gene, his dad never knew he had it either, so I couldn’t tell you who had the “S” gene or the “C” gene. It brings about a fear of meeting someone, having kids with them, and the probability of the person having the gene and having another child who has sickle cell. It’s unnerving.
But, I’m reassured by 2 Timothy 1:7 “For God has not given us a spirit of fear, but of power and of love and of a sound mind.” I try to remember this. I lean on scriptures and my prayer life is getting stronger. I pray he doesn’t get a cold, get sick, have a pain crisis, doesn’t fall too hard because he’s clumsy, doesn’t do anything that will result in a hospital stay.
According to the National Heart, Lung and Blood Institute, “Sickle cell disease is a group of inherited red blood cell disorders. People who have sickle cell disease have an abnormal protein in their red blood cells. In the United States, most people who have sickle cell disease are of African ancestry, but the condition is also common in people with a Hispanic background. Because the disease runs in families, couples planning to have children can have genetic testing.”
The website goes on to say: “Early signs and symptoms of sickle cell disease include swelling of the hands and feet; symptoms of anemia, including fatigue, or extreme tiredness; and jaundice. Over time, sickle cell disease can lead to complications such as infections, delayed growth, and episodes of pain called pain crises. Most children who have sickle cell disease are pain-free between crises, but adolescents and adults may also suffer with chronic, ongoing pain. Over a lifetime, sickle cell disease can harm a patient’s spleen, brain, eyes, lungs, liver, heart, kidneys, penis, joints, bones, or skin.”
Elijah’s diagnosis is referred to as the “good kind of sickle cell.” Unlike SS, it means there’s a likelihood that he’ll never have a pain crisis, need a blood transfusion, or have to do a hospital stay. Those are my prayers.
When I found out, I went into a complete state of shock. I asked God why. Why was he giving me this battle? Why was he giving my son this battle? But, I’ve learned that we go through things in life for two reasons: for lessons or to teach someone else. A test is only a set up for a testimony, and that’s what I stand on.
I initially cried, and, I’m not a crier. For me to cry, it takes a whole lot to happen. I’m either sad, or I’m mad.
I still remember the phone call. Elijah was a week old, and we were lying down on the couch. He was asleep, and I was trying to figure out how to effectively be a mommy.
A Greenwood number kept calling, and I ignored it. It called again and annoyed and I answered. I thought it was a telemarketer. She told me her name was Kimberly Melton, and she was a genetics nurse in Greenwood. She was calling to give me the results of EJ’s genetics test done when EJ was born.
I remember her telling me, “He tested negative for everything, but he did test positive for Sickle Cell SC.” She asked me about my history and did I have anyone in my family with Sickle Cell, and I don’t remember any more of the conversation. I blanked out.
All I could think about is the many hospital visits and pain those I knew with the disease went through. I first told my mom and dad, and then EJ’s dad. None of us knew we even carried the gene or anyone in our families who had the disease. I was devastated.
Here I am, a new mom, and my son is battling a disease that I can’t help. That thought still paralyzes me.
I met with Melton about a week later and the poor woman got lost coming to my house. She told me something that still sticks with me to this day.
“His diagnosis is not his destiny. He has a sickle cell, but the sickle cell doesn’t have him,” she said.
She set up an appointment for EJ at Batson Children’s Hospital in Jackson. The following September, I learned his actual diagnosis. His pediatric hematologist, Dr. Catherine Gordon at Batson, and his pediatrician, Dr. Paul Ruff at Starkville Pediatric, have been helpful with answering any questions I have and reassuring me that he’s okay.
I’ve also spoken with Janice Cork and Shaquita “Nick” Jobe. Janice is still battling sickle cell, and Nick won her battle. Both reassured me that he was going to be okay.
Nick, especially, was really helpful. She told me what to look for, what to do, and how to handle things. I wish I could thank her, but she died on July 4. She was incredibly strong and was there when I needed her.
In learning that EJ had sickle cell, I’ve met people in Jackson whose children are battling the same thing. Some never knew they had the gene, like me, and some did. It’s helpful to have people who understand what you’re going through as a mom whose child is battling. This also gives EJ a network of people to talk to about things I don’t understand.
Nothing stops my baby. If it’s something he wants to do, he’s going to try it no matter how bad it scares his mommy. Again, send prayers. He has to take medicine for the rest of his life. He’s on penicillin until he turns five, and he’s on folic acid –well forever.
I have to watch his sugar intake. Too much could lead to dehydration and a pain crisis. But, thankfully his hemoglobin numbers have remained good, but if they drop, it means he could have a pain crisis.
One of the things doctors told me is that he may be delayed in his milestones. He’s not. He’s advanced. He does whatever it is he wants to do. He’s stubborn. He gets it honestly.
Winter is horrible for us because it’s the time where he’s the most susceptible to a pain crisis. A pain crisis is an extended episode of pain, kind of like a seizure that’s painful. Winter is the time where I pray that he doesn’t get the flu, bronchitis, or pneumonia. Summer’s a little easier, but he has to stay hydrated, which is hard because he loves the sun and being outside. He can quickly get dehydrated in the summer.
I try to educate myself as much as I can. I want to know everything I can to help my son in any way. So much so, I’m a little overbearing. I can’t help it. But, Kim’s words echo. “He has sickle cell, but it doesn’t have him.”
She meant not to let anything make him feel crippled or like he can’t do something because of sickle cell. If Nick’s life taught me anything, it’s that. She never let the disease define her, no matter how bad she felt.
People always speak of living their best life, and she did, regardless of her battle, and that’s what I want to teach my son -- how to live and not let his sickle cell live for him.
If you’re battling sickle cell or your child is, please reach out to me at lcoffey@winonatimes.com. I’d love to share your story with our readers as well or just to meet you for encouragement. I could use it. Sometimes, it’s all we need to keep going.
