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New Parents and a Newborn with Sickle Cell Disease: What Now?

NNPA NEWSWIRE — In this article, I’d like to introduce you to TaLana Hughes, a mother of three who is also the executive director of the Sickle Cell Disease Association of Illinois (SCDAI). TaLana has one child with Sickle Cell Disease and two children with the sickle cell trait.

Published

6 years ago

August 4, 2019

Oakland Post

Ask Dr. Kevin

By Dr. Kevin Williams , Chief Medical Officer for Rare Disease at Pfizer

The “Ask Dr. Kevin” series is brought to you by Pfizer Rare Disease in collaboration with the National Newspaper Publishers Association (NNPA) to increase understanding of sickle cell disease.

Dr. Kevin Williams is the Chief Medical Officer for Rare Disease at Pfizer where he leads a Medical Affairs organization of approximately 150 medical colleagues around the globe. He pursued medicine after being inspired by his father’s work as a general practitioner in his hometown of Baton Rouge, Louisiana. Dr. Kevin is passionate about raising awareness and increasing understanding of rare diseases, such as sickle cell disease, in the African American community.

For the last two years, I’ve been honored to talk with you about sickle cell disease (SCD) through this column, sharing important information and my perspectives as a medical professional. Now, as the “Ask Dr. Kevin” series enters its third year, I wanted to change things a bit by letting you also hear directly from those who matter most—people living with SCD and their caregivers.

In this article, I’d like to introduce you to TaLana Hughes, a mother of three who is also the executive director of the Sickle Cell Disease Association of Illinois (SCDAI). TaLana has one child with SCD and two children with the sickle cell trait.

As TaLana knows from both personal experience and through her work with 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.

In order to help people better understand what it’s like to be a parent of a newborn with SCD, and how family and friends can be most helpful, TaLana and I share our thoughts below on some of the most common questions we’ve been asked about the topic.

What are the biggest fears and challenges parents face upon learning their child has SCD?

TaLana: 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. After the initial shock wore off, a million questions started to run through our minds, and we wondered what this would ultimately mean for our daughter.

Dr. Kevin: I know that for many parents, an SCD diagnosis can certainly be overwhelming, and I see how parents may fear the worst. However, 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.

I also can’t stress enough to new parents the importance of setting up a healthcare team for their child as soon as possible. Receiving care early and often can help reduce the impacts and complications of the disease. SCD takes a toll on all systems of the body, so having a team made up of a pediatric hematologist, primary care doctor, and other specialists, such as an eye doctor, pulmonologist, cardiologist, and dentist, is key to the health of the child.

What are some tips for helping parents cope with the news?

TaLana: 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.

Dr. Kevin: I’ve seen incredible connections and support systems form when parents of a child with SCD talk with other parents going through the same thing. There’s a certain comfort that comes from talking to those who have “been there, done that.” Parents can meet other families through local community groups, online platforms like oneSCDvoice*, which includes curated content and a wealth of information for those in the SCD community, and the Sickle Cell Disease Association of America (SCDAA), which publishes a calendar of local SCD events around the country.

How can family and friends offer support?

TaLana: 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.

Dr. Kevin: 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. As I mentioned in a previous article, this is a myth! The majority of children with SCD live to adulthood, thanks to advances in SCD care. However, the life expectancy of someone with SCD in the US is only between 40 and 60 years, compared to average US life expectancy of 78.8 years. By understanding the truths about SCD, family and friends are in a better position to provide meaningful support and be allies.

What tools are most helpful for new parents caring for their child with SCD?

TaLana: 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.

Dr. Kevin: These are great suggestions. I would also encourage parents to connect with their local SCD organization, like an SCDAA local chapter. With a disease like SCD, which is rare in the US and often misunderstood, connecting with others who have similar experiences and challenges is so important for building your support system.

Do infants experience pain crises? What are the warning signs? What is your best advice for new parents when it comes to handling a newborn having a crisis?

TaLana: 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: It’s also important for parents to understand that pain crises are unfortunately a universal experience for people with SCD. Crises typically manifest in infants aged six months and older, and they are often unpredictable and can occur up to several times a year. So, to TaLana’s point, learning to recognize what a pain crisis looks like in their child will help parents know when to seek help.

What do babysitters or other caregivers need to know?

TaLana: I make sure other caregivers and babysitters know about my child’s personal regimens and what to do in case of an emergency. I share important pointers, like to make sure my child is hydrated and never around smoke, which can increase the risk of Acute Chest Syndrome (ACS), a bout of pneumonia or a serious lung condition due to the sickling of red blood cells, in people with SCD.

Lastly, I make sure they know how special my child is and all the wonderful qualities she has. I tell them her likes and dislikes, hobbies and interests, and what makes her laugh. Having SCD may be a normal part of my child’s life, but I make sure she is not defined by her condition.

Dr. Kevin: I agree wholeheartedly. Children with SCD are children first and foremost. While the disease affects them, it certainly does not define them—nor should SCD or any disease define the person who has it.

For more information about parenting a child with SCD, check out “A Parents Handbook for Sickle Cell Disease” and the CDC’s “5 Facts You Should Know about SCD.”

Keep up to date on Pfizer’s SCD efforts by visiting our page here. You can also follow Pfizer on Facebook and Twitter.

*Supported by Pfizer

About Dr. Kevin Williams

Dr. Kevin Williams is the Chief Medical Officer (CMO) for Pfizer Rare Disease. In this role, he leads a Medical Affairs organization of approximately 150 medical colleagues around the globe supporting Pfizer’s efforts and portfolio in Rare Disease. Dr. Kevin joined Pfizer in January 2004 as a Director of Regional Medical & Research Specialist working in the HIV disease area. After moving into a Team Leader position in July 2005, he served in various leadership roles during his career at Pfizer. Dr. Kevin moved into his current Rare Disease CMO position in May 2016.

Dr. Kevin received his medical degree from the UCLA School of Medicine and is board certified in Internal Medicine. Following a 2-year fellowship in Health Services Research at UCLA and a brief academic career as an Instructor of Medicine at the UCLA School of Medicine, he spent 8 years in private practice caring for HIV-positive patients while maintaining an academic appointment at the UCLA School of Medicine as an Assistant Clinical Professor of Medicine. In addition to his medical degree, Dr. Kevin has a Master’s in Public Health from the UCLA School of Public Health and a Juris Doctorate from Harvard Law School.

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LIHEAP Funds Released After Weeks of Delay as States and the District Rush to Protect Households from the Cold

BLACKPRESSUSA NEWSWIRE — The federal government has released $3.6 billion in home heating assistance after a delay that left states preparing for the start of winter without the program’s annual funding.

Published

4 days ago

December 1, 2025

Stacy M. Brown

By Stacy M. Brown
Black Press USA Senior National Correspondent

The federal government has released $3.6 billion in home heating assistance after a delay that left states preparing for the start of winter without the program’s annual funding. The Low-Income Home Energy Assistance Program, known as LIHEAP, helps eligible households pay heating and cooling bills. The release follows a shutdown that stretched 43 days and pushed agencies across the country to warn families of possible disruptions.

State officials in Minnesota, Kansas, New York, and Pennsylvania had already issued alerts that the delay could slow the processing of applications or force families to wait until December for help. In Pennsylvania, more than 300,000 households depend on the program each year. Minnesota officials noted that older adults, young children, and people with disabilities face the highest risk as temperatures fall.

The delay also raised concerns among advocates who track household debt tied to rising utility costs. National Energy Assistance Directors Association Executive Director Mark Wolfe said the funds were “essential and long overdue” and added that high arrearages and increased energy prices have strained families seeking help.

Some states faced additional pressure when other services were affected by the shutdown. According to data reviewed by national energy advocates, roughly 68 percent of LIHEAP households also receive nutrition assistance, and the freeze in multiple programs increased the financial burden on low-income residents. Wolfe said families were placed in “an even more precarious situation than usual” as the shutdown stretched into November.

In Maryland, lawmakers urged the Trump administration to release funds after the state recorded its first cold-related death of the season. The Maryland Department of Health reported that a man in his 30s was found outdoors in Frederick County when temperatures dropped. Last winter, the state documented 75 cold-related deaths, the highest number in five years. Rep Kweisi Mfume joined more than 100 House members calling for immediate federal action and said LIHEAP “is not a luxury” for the 100,000 Maryland households that rely on it. He added that seniors and veterans would be placed at risk if the program remained stalled.

Maryland Gov. Wes Moore used $10.1 million in state funds to keep benefits moving, but noted that states cannot routinely replace federal dollars. His administration said families that rely on medical equipment requiring electricity are particularly vulnerable.

The District of Columbia has already mapped out its FY26 LIHEAP structure in documents filed with the federal government. The District’s plan shows that heating assistance, cooling assistance, weatherization, and year-round crisis assistance operate from October 1 through September 30. The District allocates 50 percent of its LIHEAP funds to heating assistance, 10 percent to cooling, 13 percent to year-round crisis assistance, 15 percent to weatherization, and 10 percent to administrative costs. Two percent is used for services that help residents reduce energy needs, including education on reading utility bills and identifying energy waste.

The District’s plan lists a minimum LIHEAP benefit of $200 and a maximum of $1,800 for both heating and cooling assistance. Crisis benefits are provided separately and may reach up to $500 when needed to resolve an emergency. The plan states that a household is considered in crisis if it has been disconnected from energy service, if heating oil is at 5 percent or less of capacity, or if the household has at least $200 owed after the regular benefit is applied.

The District’s filing notes that LIHEAP staff conduct outreach through community meetings, senior housing sites, Advisory Neighborhood Commissions, social media, posters, and mass mailings. The plan confirms that LIHEAP applicants can apply in person, by mail, by email, or through a mobile-friendly online application and that physically disabled residents may request in-home visits.

As agencies nationwide begin distributing the newly released funds, states continue working through large volumes of applications. Wolfe said LIHEAP administrators “have been notified that the award letters have gone out and the states can begin to draw down the funds.”

Stacy M. Brown

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Seven Steps to Help Your Child Build Meaningful Connections

BLACKPRESSUSA NEWSWIRE — Swinging side by side with a friend on the playground. Sharing chalk over bright, colorful sidewalk drawings. Hiding behind a tree during a spirited game of hide-and-seek. These simple moments between children may seem small, but they matter more than we think

Published

5 days ago

December 1, 2025

Oakland Post

By Niyoka McCoy, Ed.D., Chief Learning Officer, Stride/K12

Swinging side by side with a friend on the playground. Sharing chalk over bright, colorful sidewalk drawings. Hiding behind a tree during a spirited game of hide-and-seek. These simple moments between children may seem small, but they matter more than we think: They lay the foundation for some of life’s most important skills.

Through everyday play, young children begin learning essential social and emotional skills like sharing, resolving conflicts, showing empathy, and managing their emotions. These social skills help shape emotional growth and set kids up for long-term success. Socialization in early childhood isn’t just a “nice-to-have”—it’s essential for development.

Yet today, many young children who haven’t yet started school aren’t getting enough consistent, meaningful interaction with peers. Research shows that there’s a decline in active free play and peer socialization when compared to previous generations.

There are many reasons for this. Children who are home with a parent during the day may spend most of their time with adults, limiting opportunities for peer play. Those in daycare or preschool may have restricted free play, and large classrooms can reduce supervision and social coaching. Some children live in rural areas, are homebound due to illness, have full schedules, or rely on screens to fill their playtime. And for some families, finding other families with young children to connect with isn’t easy.

While these challenges can feel significant, opportunities for connection still exist in every community. Families can take simple steps to help children build friendships, create a sense of belonging, and strengthen social skills. Here are some ideas to get started:

Storytime sessions at libraries or local bookstores
Community offerings such as parent-child workshops, art, music, gymnastics, swimming, or sports programs
Weekly events at children’s museums, which may include art projects, music workshops, or science experiments
Outdoor exploration, where kids can play with peers
Local parenting groups that organize playdates and group activities
Volunteer opportunities where children can participate, such as pet adoption events or packing meals at a food bank
Classes for kids at local businesses, including hardware, grocery, or craft stores

Some of these community activities are free or low-cost and give kids the chance to build friendships and practice social skills. Parents can also model positive social behavior by interacting with other parents and encouraging their children to play with their peers.

These may seem like small moments of connection, but they can have a powerful impact. Every time your child shares a toy, plays make-believe with peers, or races a friend down the slide, they’re not just playing—they’re learning the skills that build confidence, empathy, and lasting friendships. And it’s good for you, too. Creating intentional opportunities for play also helps you strengthen your own network of parents who can support one another as your children grow together.

Oakland Post

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Seven Steps to Help Your Child Build Meaningful Connections

Published

5 days ago

December 1, 2025

Oakland Post

By Niyoka McCoy, Ed.D., Chief Learning Officer, Stride/K12

Storytime sessions at libraries or local bookstores
Community offerings such as parent-child workshops, art, music, gymnastics, swimming, or sports programs
Weekly events at children’s museums, which may include art projects, music workshops, or science experiments
Outdoor exploration, where kids can play with peers
Local parenting groups that organize playdates and group activities
Volunteer opportunities where children can participate, such as pet adoption events or packing meals at a food bank
Classes for kids at local businesses, including hardware, grocery, or craft stores