Baby Nantz #3

I'll start by sharing that this update is a little less about Hayden and a little more about our family as a whole and journey to Baby Nantz #3, and yes, it has been a journey.

To give you the full story, I'll have to start at the very beginning.

Even before Hayden was born I always felt like we were meant to be a family of 5. It's an unexplainable feeling, but something, that for me was so strong, it very much became the desire of my heart. But as we all know it takes two to tango, and Hugh on the other hand felt like two was plenty.

I was so hopeful that Hayden was going to be a boy, so then I could at least play the card "let's try for a girl!". I cried and cried after we did the early ultrasound at 15 weeks with her to find out that she was in fact NOT a boy. Little did I know her surprises were just getting started.

Fast forward to Hayden's arrival, an incredibly scary diagnosis, and learning that this wasn't a fluke occurrence, but a genetic disease and that with every pregnancy there would be a 1 in 4 chance that baby would have SMA. I was devastated. Talk about compounding grief. Here we were, fighting to keep our newborn alive all while simultaneously feeling like the future of our family planning had been redirected in a way that I was neither okay with or chose.

In a rare 2% of SMA diagnoses, the parents are actually not both recessive carriers and it is more of a fluke mutation. After learning this I immediately had Hugh and I tested to confirm what we already knew, we were both carriers. I was so hopeful we might have fallen into that rare 2% meaning that possibly future pregnancies wouldn't be at such a risk. But that was not the case for us. We also took this opportunity to do additional genetic testing on ourselves to make sure that SMA was the only common carrier between us. Luckily it was.

Her first year of life was such a blur, we were truly in survival mode. If I'm being honest I remember wanting another baby right away. I wanted a do-over. It wasn't that I didn't love Hayden immensely, but there were so many big emotions entangled in her arrival that I still was yet to process and work through that it made things confusing.

In the Summer of 2020 I knew I had to start working on my mental health, trying to recover from the traumatic grief that had been consuming me and preparing myself and my mindset for the unknown road ahead. A few months into my journey, desperate for healing, I met a very special counselor who practices something called NET (Neuro Emotional Technique). NET is a method to find unresolved, negatively charged emotional responses that are stored in your body and help you release them. With this technique you are truly unlimited in the ability to address physical and behavioral stress-related conditions. NET uses a process known as manual muscle testing to identify negative emotional complexes that are being stored in the body, and helps release or resolve them. This technique is often used for patients who may be experiencing PTSD. And for me, it helped me work through months of grief that I had shoved so deep, because there was no time to process feelings when caring for a medically complex newborn. I knew that until I worked through the pain of her diagnosis, there was no way for me to enter into another pregnancy with a healthy mindset. I knew that while I wanted another baby, I didn't want another experience to trigger all the pain and hurt previously experienced. I had to heal from that first.

After almost a years worth of intense weekly sessions, primarily focused around Hayden's unexpected diagnosis: processing, understanding, and healing, I had reached a healthier place where truly considering another baby, that was still very wanted, made more sense. I had been subtly planting seeds and trying to have conversations around this topic for the better part of a year with Hugh. It was painful. We both had very fair feelings around the topic and quite frankly his reservations were very valid. And honestly, his concerns weren't even as focused around another diagnosis, like mine probably were, but more the fact that two kids are hard enough and another baby means, well, starting over.

We continued to talk and pray about it together and separately. I remember a very specific turning point where my prayers turned from "God, please let him see that it will all be okay, and how badly I want this baby, etc. etc." to "God, please allow my heart to be okay either way, please allow me to accept and respect his decision, even if it's not what I want". Those were hard prayers to pray, and to genuinely mean. But not knowing what the future would hold, maintaining a strong marital connection and not allowing resentment to creep in, I knew it was the stance I had to take.

And then, what truly felt like a miracle occurred... the week of Thanksgiving 2021 Hugh said yes to baby #3. Mind you, this man does not make decisions quickly or haphazardly. He told me that it became apparent to him that I wanted this baby more than he was okay with just two. I cried and cried. I felt like my prayers were being answered and my dream of a 3rd baby was becoming a reality. It was such a relief to have this weight lifted. Hugh and I tend to be pretty united in almost all big life decisions so it had been incredibly taxing, being divided like this.

Throughout our year of contemplating and working through this decision we had talked about all the what-ifs, the possibilities, the how-would-we-handles, etc. For many in our position where genetics present an interesting factor, IVF is often a path to future children.

We talked about it. Did our research to understand the process. We understood that our embryos would be tested and then a "healthy" non-SMA affected embryo would be transferred. We really struggled with this. Not because we don't agree with IVF. We are so happy for and support many friends who have grown their families this way. But for us, conceiving wasn't the issue. And if our journey with Hayden has taught us anything at all, it's that we are absolutely NOT in control.

Again, if our circumstances were different, and infertility was part of our story, I would imagine that IVF would have for sure been something we would have considered more in depth. After all we're all for modern medical advancements, with our $2M Gene Therapy baby and all.

But this decision felt different considering our situation. IVF isn't a guarantee. My heart was being pulled in such a strong way, unlike anything I had ever experienced. *hint* It was the Holy Spirit. I was being stretched outside of my normal place of comfort to lay this at the feet of Jesus. To give him full and total control. Something I'm not sure I have ever truly done before. I wanted to have this baby *if* He wanted us to. I wanted us to have the baby that *He* wanted us to have, SMA and all. It was joyous, and heavy and scary all at the same time.

We're so fortunate that our babies happen so quickly. In August this year we had the joy of a positive pregnancy test.

I'd be lying if I didn't admit that thoughts of SMA crept in relatively quickly after finding out we were expecting. But I knew this experience was going to grow me in incredible ways. Relinquishing control, trusting in God's plan for our family, all were going to continue shaping me in immeasurable ways.

It definitely helps that treatment for SMA has continued to come so far even since Hayden's arrival in 2020. There is now a once daily oral medication that works to stop the progression of the disease that has been approved for administration within the first few hours of life. So it wasn't even really the fear of a symptomatic child, but more the hope for a redeeming newborn experience. SMA is such a thief of a disease, and it truly robbed us of so much in Hayden's first year of life. Feeding tube, weekly blood draws after her gene therapy for 4 months, the little pink helmet, that while cute, felt like another barrier between me and my baby. I was desperate for a "normal" experience. I wanted so badly to close out this chapter of baby-having years on a positive note. So, as best I could I enjoyed a very nauseous first trimester trying to not even think about the what-ifs and just enjoying every moment. I think when you know it's your last, your perspective is just totally different.

We heard baby's heartbeat at 10 weeks and were referred to Maternal Fetal Medicine at Norton for further care. There are a few different ways to test for SMA in utero but an amniocentesis is the gold standard, if you will. We had an initial consult around 14 weeks with an incredible MFM Doctor and quickly scheduled our amnio for just 2 short weeks later. It all started to become very real at this point.

Years of wanting this baby. Months and months of fighting for this baby. So many hours of therapy preparing me for this moment, the fork in the road, another diagnosis or not. Another marked moment in our lives.

The procedure itself wasn't that terrible, yet I was so incredibly emotional. When you've been through what we've been through, it's just a lot. It was as if my hope and faith were on the line and that the years of praying for this baby, for this healthy baby, were now being tested.

I chose Jesus.

I chose His way.

I chose His will.

I was in control of that.

I knew He knew my heart. I knew He had heard my prayers. But I also know that I want to live a life as part of His bigger plan. It's not just about me. It's not just about the Nantzes. It's not just about Baby #3. We have built such incredible community through Hayden's diagnosis. Through support of friends and family we have raised tens of thousands of dollars to support ongoing research so that we can CureSMA. I know that there has been GOOD to come from her diagnosis. And if God wanted our family's story of SMA to grow, I was going to be okay with that. It was going to be hard. It was going to be sad, it wasn't going to be what I wanted. But I was okay with it.

We were told results would take 2 weeks on the amnio. I had given specific instructions for the geneticist to call Hugh. He handles stuff like this so much better than I do, and if the news he had to deliver wasn't the news I wanted, I needed to hear it from him. Not some stranger on the other line. Of course, this 2 weeks fell during the week of Thanksgiving, and Hayden and I were leaving that Sunday to travel to Chicago for her 3 week intensive at NAPA. So most likely Hugh and I were going to be apart when he got the results.

I'm going to rewind one more time to share a little about where I was a year ago this time. We had all traveled to Austin Texas for our first DMI Intensive with Hayden. Your first is always the hardest. We didn't know what to expect. Emotions were high. Hayden was exhausted. We were living in an airBNB for 3 weeks with two small children and grandmas in-and-out to help. I was in a dark place mentally. Hugh had yet to come around on the idea of another baby and I felt like it was never going to happen. I was almost grieving the idea of this baby, convinced it wasn't meant to be and that I needed to start working through letting go. While we were in Texas I had several people reach out to me to share about a local family that had recently been diagnosed, their little one had SMA just like Hayden. For some reason this was so triggering for me, in the moment. We also got the news that our nanny at the time was expecting! And while we were so thrilled for her family, her departure was going to be such a loss for us, our family and our kids. And for me, it felt like one more thing I had to pick up and carry on my shoulders. Texas was good. But Texas was hard. I reflect on that time and honestly am just so thankful that God brought me through it.

Intensives are just intense, for everyone. So going into this Chicago intensive knowing what news I'd ultimately be receiving at some point during our stay had my anxiety firing on all cylinders.

I'm writing this two weeks later and honestly I'm still in shock. Hugh called me during Hayden's nap the first day of our intensive here in Chicago, asking me what I was doing. When I told him I was by myself he just blurted out "baby has BOTH copies of SMN1, we're having a healthy baby!".

When you've been preparing and preparing, working through every scenario in your head, the ups and downs, it really takes a minute for this information to register.

If baby has 0 SMN1 genes they have SMA. If baby has 1 SMN1 gene, that means they got at least 1 copy from Hugh or I which makes them a carrier, what he and I both are and also means they're healthy. But God wanted to take this moment to remind me that He is good. He is loving, and full of grace. Because our baby has BOTH copies, one from each of us, this makes their DNA different from mine (I only have 1 copy) making these results easier to detect and confirm the accuracy of results.

To say we are elated is an understatement. It has been a journey. One I would not trade.

We're wishing you and your family a very Merry Christmas season. Our hearts are exceptionally overjoyed this year.

Love,

the Nantzes

Hugh, Logan, Avery, Hayden, & Baby Nantz

#hereforhayden