The day following learning our baby was diagnosed with Down Syndrome, Cherise called. She was following up with me to ensure that I had spoken with Aaron about the news, and letting me know the next step would be to schedule with a fetal cardiologist for the fetal echocardiogram. She continued this conversation letting me know we needed to get this appointment within the next week as we need to know the severity in order to make a decision. I paused as she said “make your decision.” What did she mean by that?
“When you say ‘make your decision’ are meaning whether or not we plan to carry the baby to term?’
“Yes. Many people opt to not carry to term simply on the diagnosis of Down Syndrome. Given the results of the heart, that could mean you decide not to carry to term also.”
“Oh I see.”
“There are two ways we can terminate if that is your decision. First way is called a D & E. This is where your cervix is dilated and the provider will use suction to evacuate the contents of your uterus. The second is where medication is injected into the baby’s heart to cause the heart to stop; then labor is induced and you deliver a stillborn. This would allow you and Aaron to hold the baby if you desire before you say good bye. Talk with Aaron and I will schedule your cardiology appointment and call you back.”
I hung up that call even more numb than I was prior. The words “evacuate the contents of your uterus” kept playing through my head, followed by “medication to stop your baby’s heartbeat.” It shocked me the difference in terminology given the option we chose if we chose to terminate. I sat at my desk at work, staring at my computer when I realized I have to approach this conversation with Aaron. I knew my thoughts on the options, I assumed his but didn’t want us to look back and say “Wish we would have had that uncomfortable conversation.”
Within sixty minutes of my morning call with Cherise, she called back. She notified me that I was scheduled for May 1st in Renton to meet with the fetal cardiologist for the fetal echocardiogram and then to meet with her again following the cardiologist appointment. 5 days - that’s how long we had to wait to know more; in the meantime, I would talk with Aaron about our options and I would research what I could about left sided hearts that are smaller than the right side of the heart.
Later that night as Aaron and I laid in bed, I shared with him details of my call with Cherise. I explained our options and that we needed to discuss this; that we needed to ensure we were both on the same page for how we move forward. This conversation was difficult. It was emotional and a conversation we never expected to have to have. Candidly, I found it ironic that we were discussing stopping the baby’s heart when it’s the baby’s heart that’s the medical issue. Thankfully Aaron and I were on the same page - either termination option was not an option for us. After all, we had just watched our baby on the ultrasound screen, we had just seen baby’s heart, legs, arms, body, and side profile. We had just watched our baby hide behind their hands to keep us from seeing their face. We agreed we would face this journey and let the outcome be what the outcome was going to be, but we would not terminate, we would carry as long as we were able.
The next five days until we could meet with our cardiologist were the LONGEST five days ever! I filled my time with work and research - sometimes google can be helpful, and other times it’s the enemy. In this situation it was a bit of both. When I searched “left sided heart smaller than right side of heart” one heart condition appeared. Hypoplastic Left Heart Syndrome (HLHS). I read all I could about this, I searched to see if maybe I could find another heart condition that wasn’t as difficult as HLHS, but with what little information I had, I could find nothing. I shared anything I read with Aaron and we both sat in fear of this being the diagnosis. I am far from well versed in this diagnosis, but what I read was this - HLHS means three surgeries over a course of time to correct the heart; it means surgery immediately after birth, and many times has a very low survival rate. Sometimes families are offered the option to not put the baby through any surgery and baby is put on palliative care until they pass. This was hard to read; a hard pill to swallow.
One evening following dinner, I decided to talk with Zion, Aysa and Riah about what I had read and what Aaron and I had been speaking about. Aaron had put Tucker to bed, and decided to join the conversation to listen to the kids thoughts. I shared with the kids how we were given options to terminate the pregnancy with the facts we know now, and that when I searched information on what little information I knew about the heart, I came up with HLHS. I further explained what that meant. I inquired how they felt. All instantly said, no to termination, agreeing we take what time we have regardless of the diagnosis on the heart. I shared with them that Aaron and I also agreed and had already made that same decision. It was the next statement made by my daughter that spoke to me, that still resonates in a deep place within me.
“Mom, you fight. You have always fought for each of us and that doesn’t stop now. Palliative care and letting baby pass with no surgery is not an option. You say yes to the surgery. You do anything you can. It’s okay if you have to be at Children’s. We would have Aaron here and he and us can take care of things at home as long as we can come see you and baby on weekends. I know mom that it could be exhausting on you, especially if you have to drive back and forth for work, but again you fight for us, so please fight for the baby too. We are a team and we get through it all together.”
Aaron and I didn’t have too many more conversations after that night. We just let the subject be the elephant in the room. Aysa’s words sat with me; they spoke right to my heart. She was right I have always fought for my kids; maybe not the same way I would be fighting for this baby, but my kids have always known I am right there, always there, and no matter what comes, I will always be right there; and they expected the same from me now, for their unborn sibling. While these words by my daughter spoke to my heart I still managed to feel unsettled.
I didn’t know if I was strong enough for this fight. If I was strong enough to love and lose a child. I didn’t know if it was fair of me to bring a baby into this world to immediately have to fight for their life but at that same time was it fair of me to bring a baby into this world and not give them the option to fight?
The next night I laid in bed, Aaron next to me playing on his phone while I searched online some more about HLHS. This particular night I decided to search Facebook for support pages and it was here that I found exactly what I needed to speak straight to my heart in conjunction with the words my daughter gave me. On an HLHS page, I came across a post from a mom whose daughter was born with HLHS, it was a song by Matt Hammitt called “All of Me”. I then googled this song; I not only found the song but the story behind the song. Before I listened to the song I watched the video sharing the story behind the song - Matt Hammitt had a son born six years ago with HLHS; this song was written as part of Matt’s healing with the diagnosis. I then listened to the song… The entire song spoke right to my heart… but the following words resonated deeper than I can say, these words were God telling me “Tiani this baby needs all of you; and you have all of Me to get you through.”
“I can’t give you half my heart and pray He makes you whole..
You’re gonna have all of me
You’re gonna have all of me
‘Cause you’re worth every falling tear
You’re worth facing any fear
You’re gonna know all my love
Even if it’s not enough
Enough to mend our broken hearts
But giving you all of me is where I’ll start”
Tears streamed down my cheeks as I listened. I looked over my left shoulder to Aaron laying next to me and said “Aaron listen to this song.” I replayed the song for him to hear… tears welled in his eyes as well as he listened to the song. We finished the song, held hands and I began to pray. I prayed for God to lead us, to guide us in how to proceed, to give us strength and courage, to put His arms around us during this time and show us every step to take.
The next morning I awoke with a sense of peace. I didn’t know what was ahead. I didn’t know the heart condition, I didn’t know the severity or lack thereof. I didn’t know much but I knew what I was being called to do as a mom… I was being called to fight. I was being called to give my baby all of me, to face every fear, to allow every tear to fall, to give this baby all my love and walk in faith not by sight… and beautifully Aaron agreed, he too was called to to fight, to give all of him to his baby, to face every fear, to allow every tear to fall and to give this baby all of him. Together, him and I, with the kids, would walk this journey… and that is where we sat as we waited to see the fetal echocardiologist in two days.
I'm a single mom of four radiant kids who believes in relationship with Jesus over religion. I'm trying not to battle with fear anymore - instead I am choosing to follow what God has called me to do. With that you'll find me here, trying to be brave, with the goal of being authentic and honest about God, single parenting and the beauty in the mess of my joyful chaos. It's sure to be a journey... and I am blessed to share it with you!