Ledger : What He Was Supposed to Be

February is Rare Disease Awareness Month

By Abby Faumuina
Mommy to Ledger
Limb Body Wall Complex
April 12, 2023

After trying to get pregnant for over 3 years, we finally gave up and decided we were probably infertile. To our surprise, on August 27, 2023 we found out I was pregnant. It was the best shock of our lives. We were absolutely ecstatic!

It honestly all just seemed so surreal. My family has a long history of miscarriage/stillborn pregnancies. I tried to not even get my hopes up until we made it past the first trimester, so we weren’t in the “danger zone” for a miscarriage. Once we made it to 13 weeks, we finally let ourselves truly get excited. I remember repeatedly asking my husband “can you believe we’re actually going to have a baby?! We’re not infertile! It’s possible, it just wasn’t God’s timing. 

Right after my 14-week appointment, we went to an ultrasound clinic in Springfield called Show-Me Baby 4D ultrasound. We went to see if we could find out the gender early. I knew from the beginning that our baby was a boy. I was so excited to have a boy to love me so much. I dreamed of him being a toddler, and his unconditional love for me. I couldn’t wait. I couldn’t wait to see my husband become a father and raise our son. 

While the ultrasound tech was looking at our sweet baby, I asked a few questions which led him to tell us that something was very abnormal about our baby’s abdomen and he wasn’t able to determine the gender. I immediately messaged my doctor and asked for an appointment ASAP, and sent pictures as well. They scheduled us an appointment with MFM for the following week. On October 31, 2023, we went to the specialist, nervous, yet hopeful.

During the ultrasound, our sweet baby was moving all over. I could feel the joy in his spirit. I knew how happy he was. Once the ultrasound was over, my husband Keanu asked me if I looked at the tech’s face. I told him I didn’t because I was too focused on our baby. He told me that the tech looked extremely concerned and confused.

We waited in one of the rooms for what seemed like an eternity. Finally a doctor came in. She introduced herself, then showed us the ultrasounds. After telling us what she had seen, she told us that our baby’s diagnosis was something extremely rare called Limb Body Wall Complex, where the baby’s organs develop outside the body, often attached to the placenta.

She then told us that it is incompatible with life outside the womb. She explained that it was a terminal pregnancy, and with how extreme our case was, there was absolutely 0% chance of our child living once born 

Our hearts sank. I tried to ask questions through the tears. I wanted to understand why this happened. How it happened. Yet, she had no answers. It’s just some sort of freak accident. No one has any idea how or why it happens.

She told us our options. She told us that the likelihood of carrying this baby anywhere close to term is extremely unlikely, and if I didn’t miscarry soon, a stillborn was the most likely option. She also explained to us the details of a termination of pregnancy.

I couldn’t. I knew that this baby was sent to us exactly how God wanted him to be, and it was all for a reason. I couldn’t get in the way of God’s hand, and take away the possibility of a miracle if that’s what he wanted to happen.

A few appointments later, we were told about On Angels’ Wings. I was actually hesitant to contact them. I didn’t want to freeload and seem like a basket case. But we scheduled maternity pictures with them to start with, I am SO grateful I did.

I had always wanted to do a vaginal birth, and I wanted to try to do it naturally if possible. That was my hopes and goals until 34 weeks. I had carried him much further than anyone had expected. We had a meeting with the directors for each specialty in the hospital that we would have to deal with. I asked them how possible they truly thought it would be for me to have my son vaginally without severe complications. Everyone agreed that the possibility was extremely low, and I’d almost surely have to have an emergency c-section, which would increase the chance of being put under. That wasn’t an option. I knew that if my son was born alive, he probably wouldn’t live long, and I couldn’t let myself be unconscious during those precious moments. We prayed about it, and all agreed that a scheduled c-section was the best option for us.

I made it to 37.5 weeks, and probably would’ve gone longer if it wasn’t a scheduled c-section. We had already beat all of the odds. No one thought I’d carry him longer than 34 weeks, and most doctors excepted a stillborn. We went into the hospital at 5am on April 12, 2023. I was so excited. It was the day that I would finally get to meet my son and see what he looked like. See if his diagnosis would be as awful looking as everyone said.

With LBWC, the umbilical cords are extremely short, if present at all. Many babies are attached directly to the placenta. Our doctors expected this to be the case, although we believed that he had some cord, even if it was very short. The risk of complications with the birth was very high. Placental abruption was the biggest concern. How could they get my baby out without ripping his organs, or ripping the placenta? Or both? Would he die in the process because the cord would tear? These were all of the questions and concerns.

Although these were all concerns, I truly never felt scared. I had prayed and talked to God so much. I told him I was willing, and even happy to do this, if it’s what he wanted. He told me that my son wasn’t supposed to live, but that didn’t mean that miracles weren’t to be performed. I asked God to let our son be born alive. I wanted more than anything to see his eyes. I wanted to make eye contact with him and have that connection. I also asked for him to help my body release the placenta when I gave birth.

Everything I asked God for came to pass.

Our beautiful son was born alive. His body obviously had issues, but it wasn’t scary or traumatizing. He was incredibly beautiful. They placed him on my chest, and as soon as they did, he opened his eyes, and just stared at me. I talked to him and told him how much I loved him and how I couldn’t wait to have him again in the next life.

After holding him for a few minutes, I passed him on to my husband. He also opened his eyes and looked at my husband and my mother. He was interactive for about 15 minutes.

Our sweet boy lived on this earth for 1 hour and 3 minutes.

We asked my OB how everything happened at my 6 week check up, and we thanked her so much for doing so wonderful and taking care of us. She said “Ya know, it really wasn’t me! As I went to pull him out, I felt a little tug, and then everything came out all at once. The amniotic sac even came out and wrapped around his organs. I didn’t do anything, it just happened!”

Literally everything I had prayed for was given to me. My body healed incredibly fast and well.  I was up walking the day after my surgery and didn’t slow down. It was almost as if nothing ever happened.

Since our baby’s diagnosis was terminal, we are now parents, but have no children on Earth. We went through an extremely difficult situation and came out 1000% stronger. Everything that happened changed me and my family in the best, and most incredible ways possible. I am a much better person because of it. I trust God so much more, and my husband and I grew so much closer than before. I truly would not trade what happened for anything. I know that we will get our son again, he was just needed so much more in Heaven.

About 5 months after Ledger passed, I found out I was pregnant again! After all that difficulty to get pregnant the first time, and we’re expecting our rainbow baby this spring! We are doing indescribably well. We miss our son, but we have so much peace with everything that happened, that there’s no room for us to be angry or upset. We are so eager for this new baby. We can’t wait to see where the rest of our journey takes us!

My hopes and dreams are to be the best wife and mother I can be. Not only that, but I hope to share my experiences with other families going through something similar. I dream of giving them hope and inspiring them. I hope that my faith and testimony inspire others to have the strength they need to make it through hard situations and be okay in the end. To trust God’s plan, or whatever belief that they have. I hope that they will trust the way things are supposed to go and know that situations like this are not mistakes.

It might not be fair, but that doesn’t make it wrong.

Our journey was so fleeting, and sometimes it doesn’t feel real. It feels like it was all just a dream. The pictures provided to us through On Angels’ Wings have made it real. We look at them often, and remember our beautiful son, and the precious memories that were made through our experience.

Don’t hesitate to contact On Angels’ Wings so they can support you through this journey. I have loved the ongoing support and everything that OAW entails. As soon as I found out I was pregnant with my rainbow baby, Michelle reached out to me to get maternity photos set up. They also reach out to check and see if there’s anything we are in need of, send us little memorial gifts, and have grief classes for support. It is truly such an amazing program that deserves so much recognition!

You may not want to feel like a basket case, and have people feel bad for you. I didn’t want that, but people truly want to help. OAW truly, truly cares. They do this because they are passionate. They want us to have memories with our loved ones. They want to capture the love and joy that is felt between us, because sometimes, we forget about that love and joy, and just feel sorrow.

Do not hold back. It doesn’t matter if you’re private and don’t know the photographer, I promise you, you will regret not having pictures with your loved ones. Get past your fears, and do it for the future you.

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