The Elephant in the Room

By Kimberly Haugstad
Benny had those dramatic finger print bruises that a lot of babies with severe hemophilia get.  Moms know the ones: thumb prints in front on each side in middle of ribs, fingerprints in back where you leverage his weight as you pick him up, bruises all over the body.  I remember agonizing at first over how to pick him up without causing them. The guilt knowing I made them appear on my little baby weighed heavily. I think my husband really bought into the “swaddling” baby idea so he could cover them up. Of course they were harmless, but still scary.
We didn’t get a port and start regular infusions for Benny until he was 18 months old.  In that time I remember a thigh bleed from his regular checkup and shots, a shoulder bleed from who knows what, and a tushy bleed as he was learning to walk.  The tushy bleed was our first opportunity to learn how to be a firm, insistent advocate for our child in the ER and fight to get infused first, diagnose bleed later!
When I think about the random bumps, bruises and bleeds on our journey so far, ER visits tend to blend together. But one incident really jumps out.  A harmless incident, but still scary. 
 
We were shopping. Ben was about 15 months old and in a short sleeve, onesie outfit as it was a hot summer day. He was a squirmy, wiggly, curious little man with his fingers in everything, so I entered the store with him already strapped down securely in his stroller.  At that point, I was fairly immune to the look of his bruising and didn’t give a thought to the toddler bruises and hematomas along his forearms and legs.  We were twins because I’d been working in the yard that week and had visible bruises all over my legs and arms. It was life as usual for Benny and me!
The lady that approached us didn’t believe so. I noticed her sort of following us around the baby department, but didn’t really think about it until she very quietly and respectfully came up to me and offered to help.  She was a retired social worker and wanted me to have her card, “in case we needed it.”  I had just read Laurie Kelley’s book, “How to Raise a Child with Hemophilia,” cover to cover, and this topic – the proverbial elephant in the room familiar to most parents who have a child with a bleeding disorder – was addressed. I didn’t think that it would happen to us, but it did.
That little lady had such a big heart and took a risk to offer us help. I will always remember taking a very deep breath and pulling the elephant out. I smiled at her, unstrapped Benny from his stroller and rolled down his sock to show her his Medic Alert bracelet.  We spoke for about fifteen minutes.  She apologized numerous times for approaching me.  I told her, “No, a baby could have really needed you. You had the courage to do something; thank you for that.”
I didn’t purchase anything that day. After the conversation concluded, I calmly packed Benny up and made it out of the store to my car. I put him gently in the back seat, climbed in next to him, shut the door and completely lost my composure as the tears rolled down my face  The big elephant.  Domestic violence.  Someone thought that of my family and the baby I loved more than anything.  Wow.
The topic made me curious and I did a little research. It turns out that in families with chronic illness, abuse isn’t uncommon.  That little lady was right to take the risk and ask if we needed help.  We could have been a family that needed it.  I’ll never be mad at her for approaching us, but a little piece of my heart will always be sad thinking she saw us that way and made the assumption.
Helpful Resource: Evaluation for Bleeding Disorders in Suspected Child Abuse http://pediatrics.aappublications.org/content/131/4/e1314
Kimberly lives in Wisconsin with her husband, Howard, and boys Ben (11) and Johnny (9).

*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.