Raising a Child with Hemophilia

LA Kelley Communications: Origins

It sounds like a Marvel movie title, but it’s us! Our origins.
This year, 2015, marks the 25th anniversary of LA Kelley Communications. How did we get started; what made us do what we do? How far have we come?
And more amazing, how did we do it without internet or cell phones?
My son with hemophilia was born in 1987, and there was no family history of hemophilia. I have six brothers and five maternal uncles; diabetes runs rampant but not something as rare as hemophilia. A few weird coincidences surrounded his birth:
 • It wasn’t planned! We were newlyweds, deep in grad school debt and wedding
debt, and wanted to wait a few years before having a baby. We took precautions. How we got pregnant will always be something of a mystery!
• My son’s father, a scientist, worked at Biogen, on recombinant factor VIII development. Really.
• The day I went into labor, on Labor Day appropriately, I knew it was going to be a long haul so I grabbed a big and
favorite book: Peter the Great, by Robert K. Massie. My mom had given me this book at Christmas, nine months
before, when I didn’t even know I was pregnant, with the comment, “The author’s son has hemophilia and that’s why he writes about Russian history.” The delivery room nurses poked fun at me in-between contractions for reading this
epic story: “What do you have, a test in the morning?” they quipped.
Imagine what went through my mind when my son was born and was circumcised 12 hours later, and the doctor came into my hospital room scratching his head, saying they had to stitch the wound. “In 30 years I’ve never seen a child bleed like that before.” Hemophilia, I thought, just like the author’s son.
Laurie Kelley: big hair of the 80s

I won’t go into all that happened, but suffice to say we felt utterly alone, powerless, afraid. At least I did. And I really dislike feeling little control over my life. I had a hard-earned graduate degree, paid
for my own schooling and wedding, with only pennies left, and just landed finally a good job at an economic forecasting firm. Everything was looking up to get out of debt and improve our lives. Now this!

We met with the HTC staff in Boston, who were wonderful. Yet none of them even had children. They couldn’t totally prepare
me for what was to come. They did know a lot about infusions, and that scared me. Indeed, when our lovely nurse called me on a Friday afternoon to tell me my son had hemophilia, over the phone (not recommended!), I was so overcome with
fear and sadness, I thought, I know how to handle this. I promptly hung up on her.
Well, we eventually had our first infusion, first bleed, and knew to take him to the HTC for infusions. One day, while dressed in my high heels and red silk dress (this was the 80s, you know) bringing my son to daycare, I slipped on mulch in the driveway and the baby flew out of my arms. He hit his head on the driveway and started crying. I started crying. The babysitter started crying. Off to the HTC.
Hours later, when it was determined he was ok, I felt drained and scared. When I shared this story at our parents’ support group
meeting, our nurse thought it would be good if I wrote my feelings down, as a way to handle them. I did, and that started turning into a book, as I wrote down everything I learned. When my son was 6 months and learning how to stand, he bit the crib rail and started a frenulum bleed. It stopped! The HTC said to just monitor overnight.
In the morning, when I went to get him, our son was standing up in the crib, holding on to the crib rail, bottle in hand. He was
covered in blood. Now, we knew it was from the little frenulum tear, but it looked so ghastly! All I could see were two little white eyes. Blood seemed everywhere. We cleaned him up as best we could and wrapped him in a sheet to sneak him to the car. (We lived in a neighborhood where houses were about two feet apart). At the hospital, it stopped bleeding again! No factor was given
and we were sent home. But later, a mom of another child with hemophilia asked if I had give him Amicar. “What’s that?” I asked. She shared that it neutralized the saliva from breaking down a clot. Had we given it to him when we first saw the bleed, we might have saved the clot (remember it did stop at first) and prevented the hospital trip. Not even the doctors had told me that.
It was like a light bulb went off. Parents know so much. Experienced parents. But no two families went through the same thing.
There were similarities and differences. If only I could capture all these! Other parents must be going through what we’ve gone through as well. We need a book, I thought.
A book was the only option. There was no internet, no email, no Facebook, no way to read anything about hemophilia. I had contacted
the National Hemophilia Foundation and received a pamphlet. I was hungry for information and wanted to sink my teeth into a book, like a Dr. Spock book on child raising, only for hemophilia.
I had a background in child development. I knew I
could write. And I was desperate. A mission was born. My life’s mission became
to write the book I needed; that other parents needed.
I took out an ad in a homecare magazine that I was
writing a book on hemophilia and to share your stories. I had 50 phone calls
the first day. The first was from Linda in Virginia, who had a 17-year-old son
with factor IX deficiency. We spoke for two hours. The second call was from a
Linda in Washington, who also had a 17 year old with factor IX deficiency! Neither
mom had ever spoken to another mother of a child with hemophilia. This is how
separated we were. I put them in touch with each other.
This was going to be interesting.
While at work one day, I glanced through another magazine, now defunct, called HemaLog. It was superficial and sugarcoated. I bristled at how it talked “down” to me. Yes, I was taking it all too
personally, but my Irish temper got the better of me. I tore out the business reply card, told them what I really thought, and tossed it in the mail. I felt better.
I felt much worse three days later when Rob Partridge
called me. He was the product manager for Monoclate-P, a factor VIII product
manufactured by Armour Pharmaceutical. I almost sank under my desk in embarrassment,
but he assured me he wanted to know what parents thought and what Armour could
do to help.
I told him we needed a book, a parenting book. Desperately.
Great! he said. How, when, how much? We talked about
what this would look like and before I knew it, we had a contract. I was going
to be an author. He took a huge risk, but I have to say it was a match made in
heaven. Rob was new in his position and looking to make a difference. And so
was I.
The book was hammered out in 8 months; I had a
deadline. Another baby on the way. For 8 months I worked all day at my job as
an economist, picked my son up from day care, came home, bathed him, played with
him, made him dinner, put him to bed, and worked till midnight on the book. My
computer was a 25-pound Compaq, that I wheeled out of work each night using a
handcart. The screen was black with little green letters; primitive by today’s
standards. There was no internet. No cutting and pasting. I read every single
submission sent to me. In total, 125 people. A wealth of knowledge. I learned
so much and was excited to bring this to the community.
Finally October 27, 1990 the book was done. Just in time. At 1 am October 28, my birthday, my daughter was born. My book and
daughter, born at the same time.
With the publication of my book, which I insisted would be given free of charge to families, I thought my life’s work was complete. I published a book! Now I could go back to being an economist, right?
Life had other plans!
To be continued…

NHF 59th Annual Meeting: Good Times, Changing Times

NHF’s 59th Annual Meeting wrapped up today after a full three days of workshops, lectures, children’s activities and wonderful social events. It’s estimated over 2,000 people attended, but certainly this was a record attendance judging from the crowds. This was a great time amidst the changing times we now face with tighter insurance reimbursement, which is affecting everyone.

Held in the family-friendly city of Orlando, Florida, the event attracted families from across the country. Because the US is the world leader in factor concentrate manufacturing, and also is a world leader in hemophilia research, the event drew in visitors from Mexico, Guam, Puerto Rico and even China. Held at the stunning Orlando World Center Marriott, the venue offered plenty of space for all the meetings and is close to the theme parks Sea World and Universal Studios.

This was my 16th annual meeting, and I think I saw more of my long time friends and colleagues than ever before. We all laughed at how we have changed over the years, and marveled at our children, now in their teens and 20s. We remember those we have lost, and are deeply grateful for those still with us.

My main task was to be present for a book signing of “Raising a Child With Hemophilia,” edition 4, completely revised and redesigned, and supported with a grant by CSL Behring. We gave away many copies and heard many stories of how this book, first launched in 1991, helped so many families through the early years of child rearing. Indeed, some of the moms who first submitted stories for the book, back in 1989, were actually there! This included for me a surprise visit by Lou Ann Helman and her son Stephen, whom I have not seen in over 10 years, and who gave me many insights into hemophilia when I was first writing the book.

I also saw Jocelyn Bessette Gorlin, now of Children’s Hospital of Minneapolis, but who was originally at Boston Children’s Hospital, and was the nurse who first called me on a Friday afternoon to say “Your son has hemophilia…” Jocelyn was the first person to introduce me to and walk me through hemophilia, and she encouraged me to write my book, and also served as medical editor. To see her again… well, there just are not words! She gave us education, support and friendship during our rough and tough times.

See all the photos here!

I attended a great symposium, sponsored by Baxter, on Transitions, and heard wonderful advice from Susan Zappa, RN, of Cook Children’s Medical Center in Fort Worth, Texas, and Danna Merritt, MSW, of Children’s Hospital of Michigan, Detroit. Transitions is a key focus area for everyone in hemophilia now, as we usher in a new generation of young adults who mercifully escaped the HIV era in the mid-eighties and who are now young adults and striking out on their own. The panel gave advice on how to equip this generation with skills and tools to live on their own successfully with a bleeding disorder.

In between sessions, families could stroll among the many booths, where pharmaceutical and home care companies provided representatives, to answer questions about products and services, and educational items about bleeding disorders.

After a day full of networking, sessions, meetings and lectures, families relaxed with evenings at Sea World, compliments of CSL Behring, and last night, Universal Studios, compliments of Baxter. After the rides was DJ-driven dancing where everyone–industry, patients and medical providers–could party.

Thanks to NHF for their incredible hard work and dedication. These events are mammoth and none of us can truly appreciate the effort that goes into it, especially when the event proceeds without a hitch. NHF is to be commended for this fabulous event. Thanks also to all the many corporate sponsors, including home care and pharmaceutical companies, and the various nonprofits, who all provide financial support. The Florida chapters excelled as our hosts. Next year’s meeting is in Denver, Colorado and we all hope to see you there!

(Photos: with Stephanie Dansker; Booths; with Debbi Adamkin and Debbie de la Riva; with Delin Kong, president of Hemophilia Home of China; with Johnny Marquez, new president of the Puerto Rico chapter; with Jocelyn Bessette, RN; Diane Horbacz with Derek Nelson)

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