Shiloh's Heart

Welcome to Shiloh's story, the first feature on Through the Grey, told by her amazing, strong, and fearless mother, Cynthia.

I have yet to meet Cynthia and her family, but we've been connected since my family and I went through our own heart transplant journey with our son Greyson. My wife and I felt so alone in this journey because we couldn't relate to anyone, so I wanted to find some families we could connect with in hopes of finding some light at the end of the dark tunnel we were going through. I happened to search #heartwarrior on Instagram and came across a beautiful photo of Cynthia and Shiloh that led me to send a friend request and follow Shiloh's story. Cynthia and her husband were so strong and put so much trust in their faith, it gave us hope. Hope that we needed and were longing for.

One day, we hope to meet this family and celebrate our heart warriors together, cry about the tough times, and laugh about all the crazy things our now not-so-little kids do.

I hope you enjoy this post as much as I did. This is merely a glimpse of what Cynthia and her family went through.

We love you Shiloh!

---

Introductory Questions

Can you share a bit about your family and what your life was like before your daughter’s heart transplant journey began? 

I got pregnant in 2020 , it was during Covid but thankfully my job was considered essential so I was able to work throughout my entire pregnancy which made my pregnancy so by super fast! All was great up until the day of delivery, I had to have a C-section and when Shiloh was born she was immediately taken to the NICU. It was then when I knew something wasn’t right and had so many unanswered questions about her health. 

When did you first learn that your daughter needed a heart transplant, and how did you process that news as a parent? 

While Shiloh was in the NICU she got put on  oxygen and also had an NG tube for nutrition. We were told that they noticed her heart was a bit swollen but didn’t know if it was due from the delivery trauma and were just going to continue to monitor it. After a month of her being in the NICU , we finally went home and had follow up with cardiology in the following weeks. After that visit with cardiology they gave me the news that Shiloh’s had an enlarged heart and had an obstruction on both sides of her heart, she was diagnosed with Hypertrophic Obstructive Cardiomyopathy and Severe Pulmonary Stenosis, she said that Shiloh needed to get admitted at Children’s Hospital Dallas right after the appt. The doctor said that Shiloh needed to get the proper treatment there and begin her plan of care for her heart. I was very confused and It was extremely hard to process, I was definitely in denial , I couldn’t believe it. One of the hardest parts was giving my husband the news. Due to Covid At the time, that appt. I had gone in by myself and my husband was waiting for us in the parking lot. I didn’t know how to tell him and how he’d take it. Once I gave him the news, he was in shock and scared of what was going to happen next. 

---

The Journey

What was the experience like waiting for a donor? How did you and your family navigate the uncertainty?

After a few days of being at the hospital the heart failure cardiology team got involved in Shilohs plan of care and they spoke to us and told us that if Shiloh’s heart continued to worsen that she would need a heart transplant. my husband and I agreed that if that was what she needed that we would move forward with it. We went through the transplant evaluation and on Feb 5th 2021 Shiloh got listed as 1A on the waiting list. 

This is when I really held on to my faith. I really clinged to my belief that Jesus was going to perform a miracle. I was still praying and hoping for supernatural healing. We had a lot support from our family, friends and church community. The waiting period was hard, there were some good days and some bad days. Prayer and worship helped me navigate through this. Listening to worship music in the room. Also connecting with other families through support groups gave me hope and encouragement. 

One thing I’ve learned is that isolation only makes things harder to deal with. The times I’ve been the most vulnerable and open is when I’ve gotten the most help. 

Can you describe what it was like on the day of the transplant? What were the emotions, fears, or hopes you felt?

When we received the news of Shiloh’s heart I had nothing but joy in my heart! I was jumping , dancing, crying! I felt all types of emotions at once. It was a beautiful feeling!! Something I’ve never experienced before!! Jesus came through at the right time! I felt so hopefully and excited for what was to come, although I knew it wasn’t going to be easy, I felt strongly supported and ready to tackle what was next! 

Were there any unexpected challenges or moments of light during your daughter’s recovery process?

Shiloh had challenges post transplant, she took longer to recover than the other transplant patients we knew. She had fluid in her lungs that required chest tubes to remove and her kidneys were functioning properly. Thankfully that got taken care of and she started to get better. We knew the light at the end of the tunnel was coming and we’d finally be able to go home! 

---

Managing Stress and Trauma

How did you and your partner manage the stress and emotions during those early days? Did you have any strategies or support systems that helped? 

We constantly had people reaching out checking up on us. Knowing we had a community supporting and covering us in prayer gave us alot of peace. Joining the support group at the hospital and connecting with other families also helped out. We would just take it day by day and focused on the small victories Shiloh showed that day and remained hopeful. 

How did this journey impact your relationship as a couple and as parents?

It definitely made us stronger by the grace of God. We had our challenges, we were apart for a while because I was staying at the hospital with Shiloh and my husband had to work so he would stay home. He’d come and see us every day after work and stay with us on the weekends. 

The times we’d disagree it would be when deciding something medical for Shiloh. There were times we’d be on the same page and times when we would see things different. Eventually we’d make a mutual decision and pray we made the right one. 

What role did community, faith, or personal practices play in helping you stay grounded?

I would be constantly praying, my faith and trust in Jesus played a huge role in maintaining calm and hopeful. I just knew that Jesus loved my daughter more than we did and that He knew what He was doing in Shiloh’s life. He had full control of everything and whatever happened was part of His plan even if it wasn’t what we wanted, God is still sovereign and faithful. 

How do you explain this journey to your daughter now that she’s older, and how has it shaped your family dynamic?

She’s still little to understand but I can’t wait to explain to her and share how strong she is! 

---

Reflections and Lessons

Looking back, what was the most challenging moment, and what gave you the strength to push through?

The most challenging moment was the waiting period , the unknown. Jesus , my husband and Shiloh were my strength to remain hopeful . 

What advice would you give to other parents who are facing medical trauma with their children?

To not get so caught up on all the bad, to remain hopeful and take it day by day. Focus on the positive things. To take a breather from time to time and leave the hospital when you can for a little bit to reset and come back stronger to fight this battle. 

Is there something you wish people understood better about families who go through organ transplants or medical crises?

To have more compassion and understanding on our lifestyle as transplant families. We may not be able to do certain things like others and things may look little different. 

---

Inspiring Others

What message would you like to share with people who are navigating their own trauma or difficult journeys?

To not lose hope and have faith, to remember that Jesus is in control of all things even the hurtful and painful moments in life. He’s always there alongside with us , guiding us and giving us the strength to endure those difficulties. Nothing stays constant, everything is a season and this too shall pass. 

What have you learned about resilience, gratitude, or life in general from this experience?

To enjoy and appreciate the blessings that you have. To not take health for granted and focus on positive, focusing on the negative only causes you worry and distracts us from enjoying the blessings in front of us. 

How has your daughter’s story inspired you or changed your perspective on what truly matters?

Shiloh’s story inspired me to be better in all areas of my life and to trust Jesus in all things. This journey has strengthened my faith and taught me that I don’t have control over everything and that worrying won’t help, instead praying and surrendering my problems to Jesus brings peace that surpasses all understanding. 

Closing Questions

Are there any resources or communities that helped your family that you’d like to share with our listeners? 

I would encourage others to seek a local church community. Don’t isolate yourselves during tough times. Join support groups on facebook and seek local families that are going through similar situations as you, being vulnerable and open helps the healing process. 

What’s something you’re looking forward to in the future with your daughter and family?

Looking forward to creating more memories with her, definitely more travel in our future and now that she has baby brother it’s going to be so sweet seeing her play and interact with him. 

If you could go back and tell yourself one thing at the start of this journey, what would it be?

Keep pushing through, this too shall pass. Nothing lasts forever, stay strong in your faith and don’t lose focus. Stay hopeful , you’re stronger than what you think. The miracle is coming!