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It’s another day in September, which means we are going to be recognizing National Sickle Cell Awareness Month.  Sickle Cell Disease is an inherited blood disorder in which blood cells may become sickle shaped and harden, causing a lot of pain.  On this episode, I am bringing back Lisa’s Story: A Daughter with Sickle Cell Disease.  I want to bring to light sicklecelldisease.org’s theme for 2021, which is Sickle Cell Matters.  This impactful disease can permeate every part of a person’s life, from deciding if they will have children and pass on the trait, to dealing with pain crises, and coping with someone passing away due to sickle cell disease.  These are all things that Lisa had to navigate as she was coming into motherhood, and as you listen to her story, I want you to really understand that sickle cell matters.  It matters to know the facts.  It matters to be aware of what is happening.  It matters to be supportive to families.

In this episode, we talk about…

[4:23] Description and prevalence of sickle cell disease

Sickle cell disease is an inherited blood disorder that affects over 100,000 Americans.  It predominantly affects black and African Americans as well as Hispanics.  According to the Center for Disease Control, sickle cell affects 1 in 365 births for blacks or African Americans.  It is so prevalent, and so it is crucial to be educated and aware of why it is happening and what we can do to support families dealing with sickle cell.

I am so honored to be able to share my conversation with Lisa, who discusses her experience of having a daughter with sickle cell disease.

[5:24] Lisa’s journey to motherhood

Lisa is originally from south Florida, and she met her husband in college. They knew having a child with sickle cell disease was a possibility from very early on in their relationship. Her husband knew he carried the trait, and when he brought it up on a date it made Lisa think about her own family history.  She had a cousin who had passed away due to complications from sickle cell, and she knew her sister had the trait.  Lisa had never, however, considered whether she was a carrier herself.  She assumed her mother would have told her or she would have discovered it by that time. 

The topic didn’t really come up again until they found out that Lisa was pregnant with her son.  Since they knew her husband carried the trait, Lisa got her blood tested as well.  The results came back, showing that she was a carrier as well.  At that point, they offered to test the fetus, but Lisa and her husband opted out of that procedure.  A week or two after her son was born, they received the results of his blood test: he did not have sickle cell disease.  

Seven years later when they were pregnant with their daughter, they hoped for the same results.  They did not do any testing in utero, as Lisa just wanted to enjoy her pregnancy.  Toward the end of her pregnancy, there was some concern that her daughter was going to be a large baby.  Around the 37th week, it was estimated that she was close to nine pounds.  They sent her to a specialist for high-risk pregnancies, and they confirmed that her daughter was about that size.  Lisa was very swollen, the specialist clinic monitored her for conditions such as diabetes and high blood pressure.  All the tests came out normal, so they decided her daughter was just a big baby who would be 9-10 pounds at birth.  

They scheduled a C-section, and as they pulled her daughter out she could hear the nurses and doctors trying to guess what her weight would be. Her daughter was born at eleven pounds, two ounces!  “Big baby, even bigger attitude,” Lisa said.

[15:24] Finding out that her daughter has sickle cell disease

About two weeks after her daughter was born, Lisa received a phone call from the hospital telling her that her daughter had sickle cell disease.  She has the SS type, and therefore they had to set up appointments with the hematologist to set up care and begin to manage the disease.

After receiving this news, Lisa fell into a deep depression.  She couldn’t bring herself to breastfeed her daughter after another month or so.  That bonding time spent holding and looking at her daughter made her so emotional, and she felt like she couldn’t enjoy those moments.  She kept thinking of all the pain her daughter would have to go through, and she just couldn’t do it.  She needed to be a stable and supportive mother for both of her children, and she had to make those hard decisions.

Her husband was training to become a firefighter at the time, and Lisa was concerned about both of them being able to hold up under the weight of their daughter’s diagnosis.  Lisa shared that their family and their support systems prayers gave them strength to make it through.

[22:29] Learning more about sickle cell disease

Lisa considered herself to be knowledgeable about sickle cell disease, especially given her family history.  When they started talking to the hematologist for their daughter, however, they learned so much more.  Sickle cell is a blood disease that affects the hemoglobin, which is the molecule in the red blood cells that delivers oxygen throughout the body.  A healthy individual has circular red blood cells, while an individual with sickle cell has distorted cells that can cause a shortage of oxygen to the body when the cells can’t circulate.  This circulation problem can cause them to fall into a sickle cell pain crisis.  If the blood cannot flow to different parts of the body, that can ultimately lead to organ failure or stroke.

When Lisa’s daughter was two, she had her first transcranial doppler to check whether the blood cells were flowing properly to the brain.  That can give an indication of whether or not they are at risk for a stroke at a young age.

[26:19] How Lisa handles her daughter’s pain crises

Lisa’s daughter’s first pain crisis was also around the time she turned two.  At that point she wasn’t communicating well when it came to sharing how she was feeling.  Now that she is a bit older, however, she can speak in full sentences and communicate where she hurts.

Lisa explains that she just knows her child.  She is on a pretty set routine when it comes to napping and sleeping, so when she wasn’t falling asleep one night that concerned Lisa.  When she went in to check on her daughter, she was clearly in pain.  She was trying to get comfortable, and she couldn’t seem to roll onto the side that she usually likes to sleep on.  Lisa got her out of the crib and sat her up on the floor, because if she wasn’t ready for bed she would usually run off and try to find her brother.  She didn’t do that, and motioned for Lisa to pick her back up.  She couldn’t stand by herself, and when Lisa stood her up she was having trouble walking.  Lisa had to call the hematologist, and they gave her some Motrin so she could sleep.  When she woke up the next morning, Lisa could tell that she still had pain in her leg.  She was able to run around and play, and Lisa alternated Motrin and Tylenol for her for about 24 hours.

Her second pain crisis happened the same way.  It was the middle of the night, and she began to cry.  She couldn’t walk at all, and it lasted for 48-72 hours.  Each pain crisis seems to get a bit worse.  Her most recent one gave her a bit of a limp, but she wouldn’t sleep.  She couldn’t get comfortable laying down, and so Lisa had to sit in the recliner with her all night so she could sleep.  If someone would pick her up, or give her a kiss, she would say that it hurt.  She seemed to be in pain all over her body.  When they took her to the hospital, they discovered that her spleen was slightly enlarged.  That explained why she couldn’t lay down, and she wasn’t really eating or drinking because of her abdominal pain.  That pain crisis lasted several days before she went back to her normal self.  Her daughter was really able to communicate about the most recent pain crisis, but with the other two it was more about being in tune with her.

[34:53] Coping with having a child with sickle cell disease

Having to care for a child with a chronic disease like this is a heavy load, and Lisa draws a lot of strength from her daughter’s strength.  Lisa has also recognized that her own strength transfers to her son.  He is watching too, and he loves his sister.  If Lisa and her husband are worried, those feelings can transfer to their children.  Keeping the lines of communication open is so important, especially as the children get older and can express how they are feeling.

[39:07] Lisa’s advice for other parents of children with sickle cell disease

Lisa advises that parents continue to educate themselves on the disease.  Especially when your children are young, they often cannot communicate about what they are feeling.  You have to be in tune with your child, and that will look different for everyone.

Education is important because science continues to develop when it comes to sickle cell disease.  It has come a long way since Lisa’s cousin passed away in 1995.  They also put a lot of trust in their team of physicians, rather than in “Dr. Google”.

Lisa has also noticed that dealing with this disease has forced some lifestyle changes on their family.  In order for her daughter to stay healthy, they all eat healthy food and stay hydrated.

[42:51] What Lisa has learned from her daughter

Lisa shares that, through her daughter, she has learned that it’s okay to be weak.  She comes from a family of strong women who don’t cry or show emotion.  Seeing her daughter have this incredible strength, while also leaning on her family in the moments that she is weak, has shown Lisa that it is okay to lean on others as well.  She can lean on her husband when she needs support, and she can still be a strong woman.

[44:31] Lisa’s favorite sickle cell disease resources

Lisa recommends checking out an Instagram group called Sickle Cell 101.  They share a wealth of knowledge and try to stay up-to-date with the medical advances going on in the sickle cell world.  There is also a book that the hematologists gave her daughter after their first appointment, called Hope and Destiny: A Patient and Parent’s Guide to Sickle Cell Anemia by Dr. Alan Sacerdote.  It breaks down what you can expect based on your child’s age, which Lisa found very helpful.  Someone also gifted her a wonderful book called Super Cells by Princess Walls.  It is a children’s book that explains the complications someone with sickle cell experiences.  Her daughter loves reading the book, and it’s a great resource to share with other children so they can learn a bit about what a sibling, cousin, or peer experiences.

Connect with Lisa:

https://www.instagram.com/thelisasykes

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