The Birthday Blues

Author: Tiffany Intal

Just in case you’re new to my blog, my daughter Annika (Niki) has severe factor VII deficiency. Although factor VII deficiency is said to be the most common of the rare bleeding disorders, I was told by a hematologist I met at the National Hemophilia Foundation’s 61st Annual Meeting that a deficiency as severe as Niki’s isn’t typically compatible with life. I must admit I agree with that logic, because I already lost a son to this disorder.

We had no family history of factor VII deficiency until Ethan was born. John and I already had two healthy boys, so learning of Ethan’s bleeding disorder was a complete shock to us. Ethan was diagnosed after he suffered a spontaneous brain hemorrhage, but by then it was too late. There was no surgical option available to relieve the pressure on his brain, so we had no choice but to withdraw care. Losing Ethan was a horrific experience, but I believe Niki could have suffered the same fate had she not been diagnosed. She is alive today because of Ethan.

Believe it or not, Ethan and Niki’s birthdays are a mere four days apart. Niki was due on what would have been Ethan’s first birthday (February 20), but was born on Ethan’s due date (February 16). John and I like to think the significance of these dates was a sign of what lay ahead.

Ethan and Niki’s birthdays passed recently, and every year I suffer the ill effects of the worst emotional cocktail imaginable. I’m overjoyed that my daughter has thrived for another year, yet overcome with sadness because my son missed another year of his life. He would have been 3 by now, you know. This time of year is always bittersweet.

Year Two Milestone

I can’t help but feel an overwhelming sense of accomplishment and relief with each birthday Niki has. Having a child turn “terrible two” may not seem like a big deal to most parents, but to us, it means the world. Ethan wasn’t able to live past one week, so watching our daughter turn 2 is a blessing. The past two years have consisted of three surgeries, countless infusions, multiple emergency room visits, three hospitalizations, a catheter infection and an inhibitor scare. She’s gone through a lot in the past 24 months, and so has our entire family. Successfully thriving as a HemoFamily is a huge accomplishment in itself.

John and I cherish each and every moment we have with Niki—with all of our children—because we ache to have those same moments with Ethan. No matter how tough HemoParenting can be sometimes, we’re always grateful for both the good and the bad days. We’re grateful we have two healthy, wonderful little boys who know how to be compassionate and empathetic. We’re grateful we’ve had two new lives join our family since Ethan lost his. If we hadn’t lost Ethan, I don’t think we would perceive our lifestyle in such a positive light. We’ve already been through the worst-case scenario, so everything else is easier to deal with. Well, on most days, anyway.

Oh, what I wouldn’t give to have Ethan here with me! What I wouldn’t give to see him blow out his candles on a birthday cake. Some days I wish it were me instead, because it’s so hard to miss moments that were never meant to be. My heart initially ached when Noie was born. I was elated with her arrival, but the more I stared at her, the more I saw Ethan. She looks exactly like him, and it made me miss him even more. Noie is nowhere near being Ethan’s “replacement,” but perhaps their uncanny likeness is a way for me to witness the moments that were never meant to be.

Just when I think I can’t survive another birthday without him, another blessing comes from above. And I am grateful.

Read more about Tiffany's life at The Art of Lion Taming.