March is Bleeding Disorders Awareness Month: One Mother’s Journey at Texas Children’s Hospital

Mother of patient at Texas Children’s Cancer and Hematology Center shares her story to shed light on bleeding disorders awareness month.  

When Haley’s son, Pierce, was five months old, he loved wiggling around and kicking in his baby bouncer. 

“He was such a happy, energetic baby,” recalls Haley. “He would bounce in that little chair for hours.”

However, where the straps touched his body, bruises — large, scary-looking bruises — began to appear. One day, Haley found a bruise that nearly covered Pierce’s back, and there was a deep hematoma underneath it. 

“It was terrifying,” said Haley. “We knew something was wrong. I remember our first concern being leukemia. Pierce was our first child, and we’d worked so hard to have him, so it was extra scary — plus, we’d done genetic testing with IVF and results had been normal. So we really didn’t know what to think.” 

As soon as possible, Haley and her husband rushed Pierce to his pediatrician. The follow-up tests, however, remained inconclusive. He didn’t have leukemia, fortunately. But they didn’t know what was causing his bruising, either. For the next three months, Pierce’s parents kept pushing for answers.   

“When he started crawling, the bruises got a lot worse,” recalls Haley. “Finally, they referred us to Texas Children’s Hospital.”

The diagnosis

When Pierce was eight months old, he was diagnosed with severe hemophilia A.

“We met Dr. Grimes at Texas Children’s — she’s an amazing doctor,” says Haley. “She did a hemophilia test on Friday morning. As soon as she got the results, she called us — it was 6 pm that same day — and explained that Pierce had severe hemophilia A, a very dangerous condition.”

“Pierce had survived eight months with essentially zero clotting factor VIII in his blood,” said Dr. Amanda B. Grimes, Director of the Immune Hematology Program at Texas Children’s Hospital and Hematology-Oncology Associate Course Director at Baylor College of Medicine. “It was fortunate that his parents continued pushing for answers and got him to Texas Children’s when they did. From there, we were able to quickly connect him with Dr. Cohen and the treatment that Pierce needed in the Hemophilia Treatment Center here at Texas Children’s.” 

“At birth, his previous hospital did a heel prick test on Pierce, and his clotting wasn’t normal,” remembers Haley. “But they didn’t make the connection to hemophilia at the time. They thought it was a false positive. I’m so glad we brought him to the experts at Texas Children’s Hospital.” 

Hemophilia A — otherwise known as classic hemophilia — is a rare blood disorder that affects approximately 12 in 100,000 males in the US. People with mild or moderate hemophilia A have difficulty controlling bleeding during surgery or after suffering an injury, whereas people with severe hemophilia A, like Pierce, develop spontaneous bleeding, including bleeding into muscles and joints, which is painful and can lead to long-term joint disease. It is a serious condition that requires lifelong treatment.     

“The human body has numerous clotting factors, or proteins, that function together to form blood clots,” said Dr. Clay T. Cohen, Associate Chief of Hematology and Director of the Hemophilia Treatment Center at Texas Children’s Hospital and Assistant Professor at Baylor College of Medicine. “People with hemophilia A are missing what’s known as factor VIII, a specific blood protein. Patients who have less than 1% of factor VIII in their blood, like Pierce, have severe hemophilia A. These patients require ongoing preventative or prophylactic medications to prevent bleeding events and the development of joint disease.”

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Pierce with his nurse coordinator Aleida Stark

Symptoms of severe hemophilia A

• Large or deep bruises, such as the hematoma Haley found on Pierce’s back
• Excessive bleeding from cuts or after vaccinations
• Bleeding into muscles and joints resulting in pain, swelling or tightness 
• Blood in urine or stool
• Nosebleeds with no known cause
• In infants, irritability with no known cause
• Bleeding into the brain: A simple bump on the head can cause brain bleeds for some people with severe hemophilia. This rarely happens, but it is one of the most serious and life-threatening complications. Symptoms include prolonged headaches, vomiting, lethargy, double vision, sudden weakness or clumsiness, and convulsions or seizures.

Treatment

The Hemophilia Treatment Center at Texas Children’s Hospital is one of only 134 federally funded hemophilia treatment programs across the country, part of a national network designed to provide state-of-the-art care to children with congenital bleeding and thrombotic disorders.

Every three to six months, Haley brings Pierce to the Hemophilia Clinic at Texas Children’s. His treatment, a molecule mimicking FVIII to replace the missing factor, can be administered subcutaneously by Haley and her husband, Pedro, at home (and later by Pierce himself when he is old enough), but his condition requires regular monitoring by his care team at Texas Children’s Hospital.

“The Hemophilia Treatment Center, staffed with pediatric hematologists and hematology nurses, helps patients like Pierce and his family monitor their often complicated drug therapy both in and out of the hospital,” said Dr. Cohen. “We feel honored to care for patients like Pierce. Our goal is to improve outcomes in all areas and give our patients the best chance of living their happiest, healthiest lives.”   

“Dr. Cohen is an amazing doctor,” said Haley. “Before we came to Texas Children’s, we had to fight so hard to get doctors to listen to us. Drs. Cohen and Grimes were the first doctors to truly listen. They immediately saw Pierce for who he was and what he was going through, and they continue to stay involved. Dr. Cohen often comes over and sits with us in the infusion center.”

Hope for the future

“So far, Pierce is responding super well to his medication,” said Haley. “We administer it bi-weekly and then bring him to Texas Children’s to monitor his blood levels, and everything looks good.”

Pierce is now one and a half years old, a rambunctious boy who loves playing with his dog, Tank, and roughhousing with his friends. Scrapes and bruises are naturally a part of his life, but thanks to his successful treatment, his spontaneous bleeding and dangerous symptoms are under control.   

“But we’re not stopping there,” said Dr. Cohen. “Our team is conducting clinical and laboratory research aimed at increasing our understanding of bleeding and clotting disorders and developing new, more effective therapies for patients like Pierce. Our clinical research is focused on novel agents that increase the safety, convenience and effectiveness of therapy for our patients.”   

“We are so grateful for Texas Children’s Hospital,” said Haley. “They truly made a life-changing difference for our family. If you’re in Houston, or can get to Houston or Austin, this is where you should bring your child. The entire team — nurses, doctors and staff — actually care about their patients.”

Learn more about Texas Children’s Cancer and Hematology Center and Bleeding Disorders Awareness Month.