Zac, Haylie – ZAP70 SCID, and their son Jax
Barb: Haylie, Let’s learn about you and your son. Your story is really inspiring because as far as we know, you’re the first Zap70 female patient who has gone on to have a successful pregnancy. What were you told by your physicians regarding your ability, or inability to have children?
Haylie: I went to Dr. Filipovich when I was 19 and she did some blood work and an ultrasound looking at my follicles. She couldn’t tell me I was infertile, but she said my follicle count was less than average, so it would be really hard to get pregnant or I might not be able to at all. They were preparing me for that, but they never really said “You cannot have children” because you can’t really tell anyone that unless they don’t have a uterus.
I just prepared myself mentally that it probably wasn’t going to happen for me. I would rather go that route than just wish I could have kids and never have it happen. I’m now a nurse and knowing that I had chemo when I was a baby, I knew that was going to affect my eggs too. So, I just came to terms with the fact that I probably would never have kids and if it happens, it happens.
On my second date with my now husband, I probably told him “I’m not going to be able to have kids” because I just wanted to put that right out there. I didn’t want to be in this for the long haul and then tell him, only to have him leave. So, I just prepared myself that way.
Barb: So the doctors never said there was no way you could get pregnant, but they made it sound like it was really unlikely and as a nurse, you understood the odds were against it.
So how far along were you when you realized or confirmed that you were actually pregnant?
Haylie: I never tried to get pregnant, but I never did anything to prevent it either. I wasn’t tracking anything. So, it just happened, and it was a very big fluke when I found out.
I was at work one day and there was this other girl who was trying to get pregnant. So, I said, “Let’s take a pregnancy test together.” I just knew mine was going to be negative because I’ve gone 10 years without getting pregnant. Well, mine came back saying I was pregnant, and I was like, “That’s not right”. So, I took another test and another test. Then I went to the doctor and found out I was seven weeks pregnant.
Barb: What was the experience like when you found out you were pregnant?
Haylie: I was in shock. For probably a couple of months I was in denial that it was true. Even after having the test, going to the OB, and getting an ultrasound done, I kept thinking, “That’s not real”. I had brainwashed myself into believing I would never be pregnant, and I couldn’t see myself being a mom. It took a long time for me to just accept that I was actually pregnant.
Then I became so excited about it, but I was also really scared because a big reason why I was scared to have kids was because of my having SCID. I knew that to pass SCID along (in the case of ZAP70), I would have to be with someone that is also a carrier of it, but look at my parents, it was very rare for my mom and dad to meet each other and for them to both be carriers. So even if he wasn’t going to have ZAP70 SCID I was frightened that my kid was going to have something just because I have this rare disease.
I was just scared to have kids because I didn’t want to have to put a baby through that, so that was my biggest worry. Mom wanted to prepare before the baby got here and I was in denial, and I didn’t even want to think about it. I was just pretty scared.
Barb: I can see your mom saying, “We’ve got to prepare for this”.
Haylie: Oh yeah, she was. I was saying, “I don’t want to research anything. I just don’t want to know”. Looking back, that probably was not the best thing to do.
Barb: When was your son born?
Haylie: Jax was born this year on September 22nd and he’s been fine really. He seems like a healthy baby. We’ve had a CBC done and they say that the white blood cells are fine.
The only thing has been that his umbilical cord wouldn’t detach on its own. We’ve had one set of tests done that said he doesn’t have ZAP70 SCID, but that was how Alex was, and Braden and I were. Our white blood count was fine, but the cells weren’t working.
Marcia: We’re trying to get additional testing done just to have peace of mind that nothing is wrong.
Barb: So besides having to have the umbilical cord removed, has he had any other concerns?
Haylie: No, He seems to be a healthy baby.
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