When my husband came home that Friday night, he took the diagnosis with characteristic calm. But he surprised me when he said, “I’ve been working in the Biogen lab on recombinant factor VIII, which is a treatment for hemophilia. I know everything about this molecule!” Another Twilight Zone moment; cue the creepy music! He explained what he knew about hemophilia, and the information actually made me settled down inside. He knew what was going on! He even said that everything would be okay, and “I don’t really play sports, so I could have had hemophilia all my life and never have known it.”
I love that he helped calm me down, but that last statement showed we really didn’t have a clue what we were in for!
I eventually made sense in my head that our newborn was diagnosed with an incurable, lifelong bleeding disorder, this seemingly ancient affliction, the “royal disease.” My husband and I called the HTC back, and booked our first appointment. I recall I went alone, and met our nurse practitioner first, Jocelyn, who was eye-catchingly young and beautiful, with cascading dark hair, a Snow White voice, and gentle demeanor that put us at ease. She looked like the actress Connie Sellecca. We laughed at how I had hung up on her!
She was reassuring, lovely and made me feel 100% better. We were at Boston Children’s Hospital, after all, a medical Mecca, a world-renowned hospital. She knew that I had a background in child developmental psychology, and in parting, she gave me a xeroxed chapter from a book about children’s concepts of health and illness. As she explained the article, I told her in awe, I knew this article. I helped write it. That was my name in the first footnote, Laureen A. Morrow. (My maiden name) We both stared at one another in surprise!
Then she asked if I had ever met anyone with hemophilia. I actually had not. Well, she said, do you know who Robert K. Massie is? Yes! I was excited; he’s my favorite author, and I was reading his book Peter the Great the night my son was born…
No, she interrupted, not the author. His son. Who has hemophilia. Would you like to talk to him? He’s offered his phone number to new parents. And he lives only 2 miles from you.
Well, two startling moments when life circles back to you: Jocelyn had just handed me my own research on child development, and she knows the son of my favorite author, whose book I received when I was pregnant with my son with hemophilia (and didn’t know it), and that I was reading while in labor with my son with hemophilia! I shared this with Jocelyn and we were both fairly shocked! She recommended the book Journey, which Bob and Suzanne Massie had written in 1974 about their experiences with a child with hemophilia. I think it’s fair to say it was the first book on hemophilia.
I bought the book and read it right away, hungry for knowledge. I crying my eyes out by page 11, and had to stop reading it. I couldn’t bear the thought of my baby, any baby, having to deal with the pain and suffering this baby did. My best defense mechanism was a Scarlett O’Hara approach: I’ll think about that tomorrow.
I was too overwhelmed and intimidated to call Bob Massie. And 10 days later, while bathing my two month old, I felt a lump in his bicep. A big hard lump. My poor irrational brain was hijacked again by rampant emotions. Now he has leukemia! I thought. I bundled him up, alone as my husband was working, and raced to Children’s Hospital in full crisis mode. I look back and realize the baby had been gurgling, happy and relaxed, and I made a situation worse by my over-reaction.
In the ER, while describing to the nurse what I thought was wrong, a baby bottle fell, smashed and milk spilled everywhere. I broke down and cried. Everything seemed wrong! The ER nurse was kind and helped me, and got me to relax. When my son was examined, there was a bruise on his inner bicep, clearly visible. I was such a hemo-newbie, it never occurred to me that this had anything too do with hemophilia! The doctor looked at the bruise, and began to ask: Did you grab your baby at any time? Did you squeeze his arm too tightly?
I realized with shock that they were quizzing me on child abuse.
How could my baby possibly gotten a bruise that caused his bicep to swell? Then I remembered 10 days ago, and his first clinic visit. The nurses had a terrible time getting a vein for a blood draw and had to hold him tight to get the vein to pop up. when I shared that with the doctor, he showed visible relief. That was it: a blood draw caused my son’s second bleed.
I learned a lot from that visit: that I was over-reacting, that a bicep bleed is slow and insidious, and not a crisis. That I tend to over-react in a crisis, and that even ER doctors may not recognize the symptoms of hemophilia. I started making notes on these things.
And I got the courage to call Bob Massie. I recall perfectly, on January 3, 1988. I settled myself in on the narrow stairs of our small house in Medford, Massachusetts, and dialed the phone (yup, dialed! It was 1988, after all!) Bob was so kind, reassuring, soothing. He himself had just become a father the month before my son was born, so we had that in common. We were both the same age, too. And he laughed when I shared my reaction to his parents’ book, Journey. Oh, don’t read that! he joked. Treatments have changed and the book is outdated. When he heard my son was diagnosed with moderate hemophilia, his entire voice changed. Oh, you won’t have anything to worry about, he reassured me. He won’t have as many bleeds; you will be fine!
Bob and I would become friends from that day on. And that conversation did more than anything to sooth my jangled nerves. Everything was going to be fine.
Next: The Turning Point
1 thought on “Origins: Part 3, Coming Full Circle”
You’ve put me back to the same place – Nathan was born in Dec 1986 and yes, Journey was the first book I read. My go to guru was Tom Harrington at HANY and then later on – Isabel Brach. Yes – I made my first call from a dial phone after being told by the first diagnosing hematologist we saw that we could anticipate a life expectancy of no more that 11 years with extensive disabilities. Tom reassured me and told me that the 1988 reality was very different than in the 1950s. He immediately had me contact Dr. Margaret Hilgartner (who had also been Robert Massie’s doctor and is mentioned in the book) – when I called the hospital and this very seasoned and compassionate woman answered and laughed and reassured and gave me direction to the HTC in NY herself – I started the process as well. We were truly forging new ground while blindly trying to figure this out. We dealt with the fear, the general ignorance of so many professionals, the quest to find the jargon, the questions – learning how to advocate while keeping our child physically but also emotionally safe. Oh Laurie….I’m sitting here sending you a giant hug and lots of love.