|New parents and a newborn with sickle cell disease|
|Published Thursday, July 11, 2019|
TaLana Hughes, a mother of three who is also the executive director of the Sickle Cell Disease Association of Illinois (SCDAI), has one child with SCD and two children with the sickle cell trait. As Hughes knows from both personal experience and through her work with the SCDAI, learning that your child has SCD can feel overwhelming and scary. While family and friends can be an important source of support, they may not always know the best way to help, and parents may find it hard to explain what they need.
KW: What are the biggest fears and challenges parents face upon learning their child has SCD?
TH: Immediately after my child received the diagnosis, my husband and I experienced an initial wave of shock and fear. It became suddenly apparent that both of us have the sickle cell trait, which we passed down to our child.
KW: It’s important to know that in recent years, we’ve seen advances in understanding and scientific breakthroughs that are potentially paving the way for better care of people with SCD.
What are some tips for helping parents cope with the news?
TH: I know that I needed time to digest the news to really understand how the diagnosis would impact our child and family. Once I had a stronger understanding of the disease and how it would manifest over time as my child grew, I started to have a better idea of the support needed from my family and our local community.
KW: How can family and friends offer support?
TH: I tell parents of children with SCD to educate their loved ones about the disease and to communicate how it affects your child. Teaching others about the condition gives me the opportunity to explain what kind of specific support I need. It also allows my family and friends to figure out how to best provide support — whether it be a ride to an appointment, a change of clothes for an overnight stay in the hospital or help with small chores at home.
KW: I also encourage family members and friends to learn as much as they can on their own, because there are still a number of misperceptions about the disease. For example, the belief that a baby born with SCD will die before reaching adulthood; this is a myth! However, the life expectancy of someone with SCD in the U.S. is only between 40 and 60 years, compared to average life expectancy of 78.8 years. What tools are most helpful for new parents caring for their child with SCD?
TH: I always carry a notebook with me so I can take notes and keep track of my child’s “baseline” and SCD history to see how the disease manifests over time. I have an overnight bag in my trunk that includes a change of clothes and snacks. I carry a thermometer in my purse to take my child’s temperature and an incentive spirometer to help facilitate stronger breathing. I’ve also joined a group chat with other parents who have children with SCD, and this has been one of my most important tools for connecting with and learning from other parents who share this experience.
KW: What is your best advice for new parents when it comes to handling a newborn having a crisis?
TH: Yes, infants can have pain crises. However, because they can’t communicate with words and explain any pain they are experiencing, recognizing pain crises can be difficult. In my own experience, the first warning signs are usually dactylitis, where the hands and feet begin to swell, and a fever. However, because new parents usually pay attention to anything out of the ordinary seen in their newborn, they often are able to notice how their own child displays warning signs.
When it comes to noticing something out of the ordinary in my child, I always play it safe. I also find it really beneficial to speak with other parents with children who have SCD and to learn about what they see in their own children and discuss how they’ve handled episodes of pain.
Dr. Kevin Williams is the chief medical officer for Pfizer Rare Disease.
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