Neurofibromatosis and IVF

“I grew up knowing I looked different from other kids. Not in a way that was major or changed my appearance drastically, but I have a lot of spots all over my skin.
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I have a genetic disorder called Neurofibromatosis type 1. It’s basically a bunch of benign tumors on my nerve endings. Any one of them can turn cancerous, which is a scary feeling to grow up knowing. And even so, I still felt like I didn't know much about it. It was never something that was discussed in my family. All I knew was I had to see a doctor every year to make sure my spots were ok and didn't change, and that my body didn’t have any physical changes.
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Once I got to high school, it was probably about 11th or 12th grade where my parents told me I would have to go through IVF to have kids.
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In my mind I was like, ‘Okay- No big deal. Medical advances have come so far. I can do this.’
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But, it's a hard thing to tell someone, especially THE one who you want to marry, that having kids naturally isn't an option for you. It’s a very hard thing for me to handle, let alone bringing someone else into it. He could decide that it was too much and that he can’t handle it.

BH (thank Gd) my husband was not that person. We went through a lot together.
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However, I don’t think either of us really knew what we were about to face.

We got set up with counselor from Bonei Olam.

From there we met with many doctors and had full genetic panels run on each of us to look for anything besides what we were trying to avoid.

We used RMA NY to help us through the IVF process. So many injections, pills, doctors, blood work etc.

I remember after my retrieval, we found out we had about 20 eggs. They had their own journey to go on.

And as each stage passed our numbers went down.

And with each phone call I got my heart sank.

In the end we had one viable embryo left.

And BH (thank Gd), we have a beautiful six year-old son.

SInce Bonei Olam only helps with one child (to my knowledge), I knew we also had to prepare ourselves for the possibility of only having one child.

As my baby grew into a toddler and then a young boy, my heart craved to have more kids.

I felt selfish for feeling that way because so many couples are striving to just have one. And here I am wanting more.

Don’t get me wrong—I love my son and I don’t ever take him for granted, but I want another baby

He asks me all the time, “Mommy I want a brother and sister. When will we have a baby?” or He tells me, “Mommy - I asked Hashem (Gd) and He hasn’t answered me yet. Is He listening?”

How do I explain this to a 6 year old? It breaks my heart and hurts my neshama (soul).

I just tell him that Hashem is always listening to you even if you can’t see of hear his answers. Just keep davening (praying).

I’m so beyond lucky to have an amazing, supportive husband. When I chose to let more people in our situation (just saying we needed help not the why), he held my hand and listened to my rants. It was such a scary and freeing experience letting people know that part of me. It scared me because it’s not only my “secret” to share. And we got incredibly luck to have amazing friends and family help us in many ways, be it financially or through prayer.

Thankfully, we got the opportunity to start another round of IVF. I have an amazing new doctor and I love the clinic we are using now (Extend Fertility).

So much has changed since we first got the chance to do this almost 8 years ago.

I had so many mixed emotions. My mind racing and doing the “What if” run around. We both went through a new battery of genetic testing (245 different genetic disorders). Semen analysis, saline sonogram (most painful experience for me), lots and lots of blood work and early morning appointments. Most of which I went to on my own.

On the day of the retrieval I didn’t want to get my hopes up so I didn’t keep a number of what they hoped to see in my mind. Afterwards, I was shocked by the number they got. And again, as before, my heart sank a bit with each drop in number. Bh ( thank Gd) we did get lucky enough to put some embryos away.

We had a failed transfer last year.

And then we needed to take a break for personal reasons.

The whole process has been so emotionally and physically draining.

I see a lot of differences in our situation now and what it was when we first started.

1) Then- in my mind it was a simple thing. I’ll have IVF and get pregnant right away because its technology etc. Now- I see how naive I was thinking that. I have gotten to know more about IVF and the infertility world. I have become more aware of what it is and means.

2) Then- it was never talked about so I didn’t think to ask questions or what to even ask. I just did what I was told or recommended. Now- I feel so much more aware for the IVF and infertility world. I think I have gained more of an understanding and I also hope I have become more sensitive. I like hoe it’s becoming less stigmatized and people are sharing their journeys more.

3) And finally I don’t think I really understood what IVF entailed emotionally because it was relatively “easy” the first time around. We have struggles a bit more this time around for many different reasons. The waiting SUCKS! I’d rather wait in a DMV line then have to go through the IVF waiting game.

My husband and I continue to daven (pray) that when it’s our time to have more children Hashem (Gd) will grant us that Bracha (blessing) in His own time and way.”