Amada : Never Forgotten

February is Rare Disease Awareness Month

By Scott McDonald
Daddy to Amada
Pentalogy of Cantrell
Born November 2022

We always wanted to have children, just not sure of the timing. We tried for some time before it happened, so when we got pregnant, we were so happy. We celebrated so much. Right before we got pregnant, we were seeing a specialist, and we just happened to get pregnant before starting infertility treatments, thanks to some ovulation tracking strips. That was what really changed the game for us.

At about 15 weeks, we found out our daughter was sick in the womb. She was diagnosed with Pentalogy of Cantrell (POC), which is several congenital birth defects in her organs that meant she would not make it. Having always wanted children this was a devastating blow. Couldn’t believe. I was in denial, angry and sad. We wanted a happy family. Of course, we assumed initially that everything was going to go smoothly, with no problems. But of course, God had other plans in reality. So we just said that this is our journey.

I just wanted to help you, baby.

When we found out our daughter – we named Amada – was sick, we decided to treat her like a normal baby. I would kiss and rub my wife’s belly. There were some beautiful moments. Just loving, having a beautiful life growing.

When Amada was born we just loved her in the room and squeezed as much positivity as we could out of the situation. She passed away during birth, as we were told she might. And it was just a devastating loss. Our families both stepped up and made us feel so welcome. Menorah Hospital was absolutely incredible and helped us feel connected and supported.

Following the loss of our daughter, my wife Anneka and I are both capable of much more empathy than before. My wife was already very empathetic, but I was less than perfect. We have suffered, so now we have more love for those that have suffered.

My wife is currently 21 weeks pregnant. So excited for our next baby. Everything looks great with our rainbow baby. All the measurements are good, everything looks healthy and we’re so excited to welcome baby into the world. I love my wife more than anything in this world, and to bring babies into the world with her is an absolute honor.

Having the support of On Angels’ Wings has absolutely made a huge impact on us. OAW was there in a horrible moment, lifting us out of a dark place, and at least just put people around us that were positive and loving and knew what we were going through and treated us like friends and family. They’ve had a huge impact.

If you or anyone you know is going through a similar situation, I highly recommend contacting OAW and enlisting their services. Even the maternity photos have really meant a lot to us. We weren’t going to have pictures but because they offered to do them, we agreed. Now those photos are priceless. The birth photos really helped us remember what a beautiful moment it was.

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