March is Bleeding Disorder Awareness Month. What’s your story?  

 In News, Teens / Young Adults

By Shari Bender


Rose was 9 months old, and she was bleeding to death. While the rest of the moms at Gymboree were planning elaborate 1st birthday parties, I sat on the floor of my sister-in-law’s condo, uncontrollably sobbing and playing images of my baby’s funeral in my mind.  I had just left the hospital. I was exhausted, worn and somewhat incoherent. My husband and mother-in-law were taking the night shift. No one knew what was wrong.

Our perfect healthy baby girl was suddenly dying. It had started about a week earlier, when I noticed that little Rose was crying, actually screaming when she pulled up in her crib. I called the pediatrician and was told to come in immediately. Upon examination, we were sent straight to the ER.

What in the world was happening?

Her knee was swollen. Internal bleeding. The wanted to tap the knee. We wouldn’t let them. After speaking with a specialist, my husband had a dad’s intuition that aspirating the knee was the wrong choice. And knowing what we know now, that procedure indeed could have killed her. Child protective services were notified. CPS spoke to us, and were enough satisfied with our “story” and allowed our baby Rose to be sent home, with us, but without answers. Just an every 4-6 hours regimen of Advil.

As dutiful and devoted parents, we did what any new parent would do. We followed the doctor’s orders like clockwork. But by the next morning, whatever had happened to her knee had now moved to her arm. Her little chunky arm was immobile.

What in the world was happening?

A call to the pediatrician bypassed the office visit and we were told to get to the hospital, Now. This time we weren’t leaving so quickly. We settled into the room with baby Rose, remarkedly in good spirits, and wanting to play peek-a-boo. That comforted us. The metal hospital crib scared us, but Rose seemed at peace with her new surroundings, and relished the attention from her parents and pinch hitter, Grandma Rhoda, who was there to make sure that Rose had at least one semi-rested parent at her side at all times. The child life specialist brought a VCR with mountains of Barney and Sesame Street tapes.  We read Moo, Baa, La La La! so many times that the book is still etched in my brain. A cow says Moo. A sheep says Baa. And three singing pigs say La La La!

But my baby’s rosy disposition belied the numbers.  Her platelets were dropping, internal bleeding that couldn’t be stopped.

What in the world was happening?

They told us she would need a blood transfusion. This tiny little person needed a blood transfusion. I grew up in the 80’s and the thought of an HIV-tainted blood transfusion entered my mind. But there was no choice. I called my big sister, a pediatrician and mom herself. You have no choice, she said. True. Whatever consequences there would be, there was no choice. My baby was deteriorating, fast. She was pale, bruised, and getting listless. This was our only hope.

On March 8, 1998 I watched in horror and hopeful confusion, as my baby girl was hooked up to a tiny red bag filled with someone else’s blood.  She would receive an infusion of whole blood, fresh frozen plasma, and cryo-precipitate, in a desperate and last attempt to stop the bleeding.

What in the world was happening?

I had given birth to my daughter 9 months ago. By all accounts she was an 8 lb. 1 oz happy healthy baby girl. Turns out, unbeknownst to us, with no family history, Rose is one of the rarest of the rare- she was born with hemophilia. No, she isn’t royal, and no, she won’t bleed to death from a paper cut. But on March 8, 1998, she was bleeding to death from a spontaneous internal knee bleed, and subsequent arm bleed from all the blood draws. And on March 8th, 1998 her life was saved by a blood transfusion. I gave her life, and the blood transfusion gave Rose her life back.

I will never know who the many donors who saved my daughter’s life. But every year, on March 8th, we celebrate, and this year marks her 23rd re-birthday. She lives across the country now, living and thriving in Washington state, working and getting a Master’s degree. She volunteers at COVID testing and vaccine sites using her skill as an EMT.  She is making a difference, and her light shines bright.

March is Bleeding Disorders Awareness month, what’s your story?

Rose’s parents donating blood in honor of their daughter, pre-COVID.  To see if you’re eligible to donate blood in your area, visit

Rose, 20 days and 23 years after her blood transfusion.

Leave a Comment

Start typing and press Enter to search