My Amnio Leads to Many More Questions

Author: Tiffany Intal

I had my amniocentesis a few weeks ago, and the results can’t come soon enough. My genetics counselor told me it would take a few weeks for the laboratory in London to complete testing the baby’s DNA. I’ve tried my best to be patient, but it feels like time is moving slower than molasses these days. I just want to know if this baby has a bleeding disorder already!

Having an amniocentesis was a completely new experience for me. I didn’t like the idea of a needle being slowly inserted into my abdomen, but I knew it had to be done. I don’t do well with pain, so I was very nervous. Lucky for me, the nurse who assisted with the amnio did some “sensory redirection” to help ease my discomfort. The further the needle was thrust into my abdomen, the more vigorously she massaged my calves. This technique helped quite a bit. It was odd to feel comfort and pain simultaneously, but in retrospect, I think the procedure would have been far worse if all I had to focus on was the pain.

Raising Another Bleeder

John and I don’t know the baby’s bleeding disorder status yet, but we do know the type of genetic mutation we have. We’ve been carriers of the factor VII-deficient gene our entire lives, but we’ve never had any symptoms. We both have incomplete mutations, which means if our children are factor VII deficient, they will always be severely deficient. We’ll never have moderate or mildly affected children, because the data simply aren’t present in our genes. It looks like it’s going to be all or nothing if we’re to have any more children affected by this disorder.

Children are always a blessing, but John and I decided this baby will be the last time we “roll the dice.” Our hope of having children not as severely affected as Ethan and Niki has been completely obliterated. I know it is entirely possible to raise multiple children with bleeding disorders, but I also know our personal and financial limitations. Bleeding disorder or not, raising four children is going to be expensive and emotionally exhausting.

My Amazing Daughter

This pregnancy has made me think a lot about all that Niki has overcome in the past 18 months. It makes me sad and proud at the same time. She’s such an amazing little girl. As her mother, I’ve learned so much, but I still know so little about raising a child with a bleeding disorder. To be quite honest, I feel utterly incompetent whenever I think about what I’m going to do if I have two “bleeders” to raise.

My boys have also gone through so much since Ethan and Niki were born, and I question my ability to be an adequate mom/caregiver/consoler for two “normals” and two “deficients.” Sometimes, I just don’t feel like I’m good enough. Or maybe that’s just my pregnancy hormones talking.

Despite all this uncertainty, I can’t wait to meet the final addition to our family. John and I were over the moon when we learned we’re having another little girl. (I have three sisters, and it is my opinion that every girl needs a sister to fight and be best friends with.) I’m already drooling over matching dresses and dreading sibling rivalry. I’m even allowing my sister to host a baby shower for me this time around. My fantasy world isn’t without reality, though. I’m also beginning to prepare myself for “bad news” once the results come in.

Where Are the Other Pregnant HemoMommies?

If my youngest daughter has a bleeding disorder, do I opt for a C-section or deliver naturally (with protocols), like I did with Niki? I often wonder what other expectant HemoMoms are deciding to do. Or, perhaps, if there are any new HemoMommies out there that recently went one way or the other. To C-section or not to C-section—that is the question. I don’t even know if I have a “bleeder” in my belly, but I’m already obsessing about the answer to that question!

Maybe I’m just looking in all the wrong places, but I feel like I’m the only one going through this right now, although I know I can’t possibly be the only pregnant carrier out there. Or am I? I’m five months pregnant, and I wish I had answers to my questions yesterday! Bleeding disorder or not? C-section or not? Will I succeed as a mother of four, or not? I suppose only time will tell.

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