A Moderate Who is Anything But
A Moderate Who is Anything But
Written by Helen Sieranski
Posted: October 10, 2025. This article was originally shared in our Summer 2025 Newsletter.
Last year, our son, Phillip, was scheduled for his nine-month check up with his pediatrician. His father and I were excited to bring him in for his appointment, but we had a few questions about some issues we noticed, as most parents do. His crawl at this early stage seemed funky and awkward, resembling a bit of an injured crab, what we now know as “hitch crawling,” along with some bruising he was developing on his lower legs and knees.
When we attended the pediatrician’s appointment with our little man, we went through all the usual topics: growth, feeding, sleeping, developmental milestones. When we brought up the bruising on his legs, he didn’t seem too concerned, however, after a second look and a push from his dad, the pediatrician agreed to test Phillip’s hemoglobin and send some bloodwork up to Yale. Little did we know, the bloodwork wasn’t the only thing being sent up to Yale in the next 5 hours.
The finger prick test done in the pediatrician’s office had never been an issue for me in the past with my daughter, who is now 9 years old. But Phillip was another story. After pricking Phillip’s finger around 1:30 PM, he was still bleeding an hour later. At 3:30 PM, we were back in the pediatrician’s office, with the doctors and medical assistants trying to apply pressure to get his finger to clot (as a sidebar – try holding pressure for 15 minutes to a 9 month old. It wasn’t easy). By 4:30 PM, Phillip and his father were on their way to Yale’s Pediatric ER. We had no idea what to expect and no idea what was wrong.
By noon the following morning, after being admitted to Yale, doing multiple blood tests, and multiple rounds of Amicar, in walked Dr. Stephanie Prozora and Heather Baribault, APRN, who we now consider our family, our advocates, and Phillip’s “bodyguards” who gave us the news that none of us ever expected: Phillip has moderate (2.2) hemophilia A (presenting as severe).
One of the things they encouraged us to do was to join NEHA and attend an event or two so that we could find our people, educate ourselves further, and be a part of the bleeding disorders community.
Our first event was FallFest 2024, and we attended as a family. It was there that we met some incredible individuals, learned so much, and made some connections that we know will last a lifetime. It felt great to be among individuals who understand the experience of hemophilia as a whole – because anyone who has or is a caretaker of someone with hemophilia knows it’s a multifaceted crusade of anxiety, fear, worry, envy, grief, anger, happiness and hope. But most of all, it’s hope.
This news that Philip had hemophilia certainly felt like a gut punch at the time, but Jackie Bottacari, LCSW, and the entire HTC Team at Yale proceeded to educate us, console us, and advise us that in one years’ time we’d be totally surprised by how resilient we and Phillip are.
They weren’t wrong.
Phillip just turned two and is regularly giving us heart attacks with his level of activity. It is, however, a thrill to know that he has an incredible team to get him through the “hard stuff” when it happens. For his future, we see endless possibilities. He’s such a vibrant soul and has already touched so many lives. He has gifted us with so many experiences, and I cannot imagine him being held back by his condition. He already lives wildly and without limitation and I pray he carries that fire into the future.
Helen and Phil live in Milford, CT, with their children, Evelynn and Phillip. Phillip has hemophilia A.