“I’ve been a NICU nurse for the last 3.5 years, and in February of 2020, I took care of the sweetest little baby, who would change my life forever. Her name was Ze’riyah Rai-lyn, and she had cerebral palsy, schizencephaly, arthrogryposis, Moebius syndrome, laryngomalacia, a tracheostomy, g-tube, and no function of her arms, but she captured my heart almost immediately.
Her parents rarely visited, and it soon became clear she was going to be entering foster care soon. One of the doctors had commented she was probably going to be in the hospital until her 2nd birthday because they probably wouldn’t be able to find anyone to take her home. At that moment, I knew God was telling me she was supposed to be a part of our family. There was no way I could let this precious little girl grow up in a hospital.
The only problem was I had to convince my husband, who is not a medical person at all. We had talked about doing foster care in the future, but he wanted to wait until we had been married longer. We had only been married for a few months at this point. After a couple weeks, I had almost gotten him to say yes. But then, I had a conversation with my mom that made me rethink things a little bit. She said I didn’t want to do this unless he was all in, because this was going to be really hard, and he might end up resenting me if things went badly. I knew she was right, and he was mainly doing this to make me happy.
So, I prayed and asked God if this was truly what he wanted us to do, that he would change Steve’s heart. I barely brought it up for a week and a half, and then Steve came up and told me he thought this was something we were supposed to do. The social worker at the hospital got us in touch with her caseworker, and she said she wanted us to at least be a little bit interested in adoption because she was pretty sure that’s where the case was heading. The only problem was that Steve couldn’t meet Ze’riyah until after we had already begun to foster her because of HIPPA. So, we said we couldn’t commit to it, but we were at least a little interested.
At the end of April 2020, Steve finally got to meet her. As soon as he laid eyes on her, he started tearing up. He knew she was supposed to be our daughter, and from that point on, we never looked back. The hospital required us to have all her home health nurses in place before we could take her home though, which took a ridiculous amount of time. I was hoping to have her home before her first birthday, but unfortunately, she had her first birthday in the hospital, and we couldn’t have any other visitors because of COVID.
But we finally got to take her home on October 28, 2020, a couple of weeks later. We lost all of our home health nurses in the first 3 weeks she was home, but luckily, I was able to take 3 months off of work whenever she came home. It did make me frustrated we had to wait months to take her home for this, only to have to start from scratch though. But my little girl was home now, and that’s all that really mattered.
I don’t think I really felt like a mom until this. Ze’riyah also liked us a lot, but she didn’t get super attached to us until she had been home for a couple of weeks. After that, we were by far her favorite people, and she would cry if anyone tried to take her out of our arms.
Despite all of her medical issues, her receptive language skills were barely behind where they should be. She quickly learned what mommy and daddy meant, and over the following months, she learned all kinds of words and phrases. One of the last phrases she learned was ‘give mommy a kiss,’ and she would turn her head, lean in, and touch her lips to my cheek. Then I would make a kissing noise and tell her ‘Good job!’ She would get so excited and have the biggest smile on her face.
In December of 2020, her biological mom signed consent for the adoption, and in January, her biological dad signed as well. Then on April 6th, 2021, she became ours forever! We changed her name to Zariah Raelynn Yates. It was one of the happiest days of my life. Unfortunately, forever didn’t last as long as we thought it would.
On June 29th, while I was at work and my husband was at the grocery store, Zariah went into cardiac arrest due to hypoxia. Her home health nurse panicked because she was having trouble breathing, and she didn’t do any of the things she was supposed to do. Zariah’s heart and lungs were healthy. So, if she was having trouble breathing, it was because something was wrong with her airway.
My husband got home two minutes before the ambulance arrived, and almost immediately noticed her trach was completely out. Without that, she couldn’t breathe at all. He put it back in right away, but by that point, the damage had been done. She wasn’t breathing and didn’t have a viable pulse.
I got a call from EMS saying that nothing they were doing was working and they would keep doing CPR until I got there. I was overcome with shock and emotion, but I was able to get out what had happened and that I needed to leave immediately. It honestly didn’t feel real. My baby was perfectly fine when I left for work that morning.
My supervisor agreed to drive me home, but as we were pulling out, they called back and said to stay there. They were able to get a pulse and were heading to the ER at the children’s hospital I worked at. But with my medical background, I knew Zariah was probably never going to recover from this, and that even if she did, she would never be the same.
When the ambulance got there, I ran to Steve and hugged him so tight as we both cried hysterically. Then I kissed my daughter’s sweet face and brushed her hair, but I knew she probably didn’t know I was there. The PICU attending came in and talked to us and said that there was a very good chance she was brain dead, but they wouldn’t be able to determine that until 24 hours after the event. I knew it was a possibility in my head, but it was so hard hearing someone actually say so. I completely fell apart again.
Luckily, they made an exception and allowed my mom to come up. I know I’m an adult, and my husband was there, but sometimes, in moments like this, you just really need your mom to hold you and cry with you. I was also crying out to God, praying for a miracle. But I also asked that if it was time for her to go, he would take very good care of my baby until I was able to see her again.
They later determined she wasn’t brain dead: she was triggering the breaths on her ventilator and her pupils were starting to respond. So, we had a little bit of hope, but that night, her brain activity decreased so much on her EEG they thought something was wrong with the machine, but it wasn’t. It soon became clear she was never going to regain consciousness, and we had to make the impossible decision no parent should ever have to make.
I had been praying God would make any decision we had to make super obvious because I didn’t know how I was supposed to make it. And when it came down to it, there was no other decision to make. Steve wanted us to remove care on Tuesday because that would mean we officially got to be her parents for three months. On Saturday, I got to hold Zariah for the first time since this had happened. I just held her and sobbed as I whispered in her ear, ‘I’m so sorry this happened and that mommy wasn’t there to protect you.’
During the next few days, we got to hold her a lot, and our family members came to say goodbye. It was so hard watching my 9-year-old sister say goodbye to her niece for the last time.
Then on July 6th, we removed the ventilator, and my husband and I held our daughter while she took her last breath. We had been hoping to donate her organs, which was giving me some peace, but it took 15 minutes too long for her to pass. We cried and held her lifeless body for another 30 minutes after she passed. Even though we knew she was gone, we didn’t want to let her go.
We eventually told them it was okay to take her away, and our parents came into the room and hugged us. Then we had to leave the hospital without our daughter, and I just felt numb as we walked out. It was like I was so emotionally spent, my body wasn’t allowing me to feel anything anymore. I didn’t have any more tears left to cry.
Now, we have begun the process of healing from this tragedy. We knew Zariah probably wasn’t going to outlive us. No doctor would give us an estimated life expectancy though, because there was probably no other child like her in the world, but everyone seemed extremely optimistic because she was doing so well. She had a TRPV4 gene mutation, which has only been found in a few people worldwide. This gene mutation explains most of her issues, but her schizencephaly was completely unrelated. She just got really unlucky, but I loved all of her little quirks.
During our time with Zariah, we welcomed four other foster kids into our home, ranging from 1-7 years old. We currently have three still in our house. At first, I wasn’t sure if we could keep the kids, because of everything going on. But then I realized it would probably be a lot harder to come home to an empty house and even harder to have to say more goodbyes. Their caseworkers and counselors also thought it would be better for them to stay with us, and it was 100% the right decision for our family. I thank God for these kids every day because they have been my saving grace these last few weeks.
Pouring my heart and soul into these kids gives me a reason to get out of bed in the morning. Not only that, but they also make me smile and laugh after I’ve been having a really hard time. Yes, there are lots of hard moments too, but I wouldn’t trade it for the world.
I feel like I’m doing exactly what God has created me to do. And while I may never understand why God took sweet Zariah away from us so soon, I know that no matter what, he is still good. And I’m clinging to his promise in Romans 8:28, ‘And we know that for those who love God, all things work together for good for those who are called according to his purpose.’
My prayer is that everyone who reads her story is impacted, and it encourages people to step out of their comfort zone and do hard things, even if you might end up getting your heart broken. Even if I knew how this was going to end, I would do it all over again. Steve and I don’t regret a thing. Zariah deserved all of the love in the world, and I enjoyed every second I got to be her mom.”
This story was submitted to Love What Matters by Sarah and Stephen Yates from Columbia, Missouri in memory of their daughter Zariah Raelynn Yates. You can follow their journey on Instagram. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories.
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