Faith, hope and trust that whatever is meant to be will happen. Hannah and Brent had been told multiple times their baby might not make it, to the point where they truly accepted that truth and put Aria’s fate into God’s hands, here is Hannah’s story…
On September 7th, 2017 My baby girl Aria was born after two rounds of IVF and an easy pregnancy. My husband Brent and I took Aria home and experienced the multiple sleepless nights as first time parents with a perfect newborn. When Aria was one week old, we took her into the ER because her breathing seemed ‘off’ and as new parents, we figured the peace of mind would be worth it if everything was normal. Several hours later, we were Life Flighted to Primary Children’s Hospital and were told that out perfect baby girl would need an open heart surgery. I felt like I was living some sort of sick joke. Just days before, I was complaining to Brent, my mom, my dad and everyone else that had ears about how tired and I was, and how I felt like I was going to die without sleep. Then a couple of days later, my sweet baby girl would have to be cut open and her heart would be stopped so the surgeon could operate on something the size of a strawberry. I have never dealt with anxiety well, and I felt empty, lost and confused. Aria was so small. She was perfect, how could such a beautiful person be so sick?
Aria went into her first surgery at 2 weeks old. The days leading up to her surgery, we were told that the surgery was very commonly performed (she needed her coarctation of the aorta repaired and had an ASD that needed to be patched) so we were nervous but grateful that this was a common surgery for her surgeon. We anxiously sat in the waiting room with our family and I ran into the surgeon as he was on his way into the operating room. “I looked at her echo this morning and her mitral valve regurgitation is much worse than I had previously thought,” He said. He said that we should pray for her. If the mitral valve regurgitation became worse after the repairs, she would be in a very bad place. After those words, he walked down the hall to scrub In.
It is surreal sitting in a waiting room, twiddling your thumbs, scared out of your mind as the world continues to move around you. As the world moved forward, your child’s chest is being opened up, and her heart is going to be stopped.
Several hours later, The surgeon met us in a private room. He came in with a cardiologist at his side.
Aria’s surgeon told us that he was able to make the necessary repairs which looked good, but because of the new pressures in her heart, the mitral valve regurgitation was severe and the left side of her heart was stiff. She would need an emergent and experimental surgery (where he would make an artificial valve replacement) or we could choose to let her pass. I was dumbfounded, all words had died in my throat, I was completely paralyzed in fear but there was no question in mine or Brent’s hearts. We would do everything we could to give her a chance at life, we chose surgery.
Brent spoke up immediately and asked the surgeon to do everything that he could to save our little girl. The surgeon let us know that she had less than 4% chance of surviving the operating table, and he went back to the operating room. After he left the private room, I looked closed my eyes and asked, “Brent, what are we going to do?” He took a deep breath and said “No matter what happens, she is ours forever.” Those words have shaped me and stayed in my heart and soul since the moment he uttered them. I was filled with strength and courage.
About an hour later, the surgeon let us know that Arias heart had relaxed just enough to delay the surgery and to hopefully let her grow enough before the next repair. We were so relieved and grateful. We waited in the ICU, hoping that she would have time to grow before her next surgery. About two weeks later, due to failure to thrive, Aria required her mitral valve replaced. They used a valve made of a pig heart, called the Hancock valve.
For this surgery, we knew more of what we could expect. We knew that there was absolutely nothing that we could do for our sweet Aria other than pray, hope and plead with God that things would work out, that he would be with the surgeon and that we would have the privilege to keep Aria on earth with us. Our prayers were answered! The surgery went well and a few weeks later, we were home with our sweet baby girl, hoping for a year before the next surgery.
A short three and a half months later, we were back in the hospital. Aria’s little heart was working extremely hard. One doctor explained to us like this: “just breathing is taking her the energy it would take a healthy person to run a marathon.” Aria had open heart surgery number three. This was a very technically complicated surgery for the surgeon, (he performed the Konno procedure) and also needed to replace the mitral valve because it has stiffened. The surgery went well, and we were on our way home a couple of weeks later.
The next couple months were filled with many cuddles, frequent hospital visits and two hospital admissions because she was retaining fluid.
May of 2018, Aria was admitted to the ICU. She had high pressures in her heart, and now had a growth in her heart that was restricting blood flow. She was placed on the heart transplant list because there were no longer surgical options available. We had several different medical professionals come to us the next couple of days to educate us on everything we needed to know about what to expect pre and post-transplant.
When it was explained to us that for Aria to live, there was a baby that was going to have to die, we wept. We wept for that sweet baby. We wept for the family and the suffering that they would endure. We were also filled with hope. Hope that Aria would be able to have a full and joyful life. At the end of the day, I turned to Brent and said, “I know that it will be a rocky road to transplant, but it’s going to be okay.” I was filled with assuredly and peace that she was going to survive.
10 Days later, Aria’s heart was in a very bad place. Her heart was jumping from 95-190 beats per minute in a matter of seconds, so they tried electric shocking her heart to no avail. The doctors adjusted her pacemaker to completely take over her heart and she was given paralytics and sedatives to let her body rest. She also required IV’s in her wrist and jugular. Brent and I sat outside of her room, watching the coordinated chaos as they tirelessly worked to save our sweet Aria.
The next day, her blood pressure dropped dramatically and she required several doses of adrenaline. Her body was not responding to the medications, and we were told to call our families because she was not going to survive, the Cardiologist said that she had gone septic. Later in the afternoon, they gave Aria blood and fluids which helped turn things around, she slowly and steadily improved. Within about 10 days, Aria was happy, playful and smiling. Two days later, she got upset and did not recover, which told the medical team that she would require extra support while waiting for a heart transplant.
Another two days after that, Aria received a LVAD Berlin Heart. In this surgery, cannulas are placed on the left side of the heart and pump blood outside of the body and back in through the cannulas. Aria’s blood pressure dropped dangerously low before the surgery but this surgery was Aria’s only option for survival, the surgeon said it would be a “Hail Mary.” The surgery went well and we were able to breathe easier knowing that her sick heart had the support it needed.
Five days went by… we were called at 3:00AM and Aria required a RVAD (support for the right side of her heart through the cannulas.) The surgeon came out and said “Aria is the sickest kid in the hospital, she is requiring life support for every function of her body.”
It took some time until we found out that Aria had a very large right sided stroke that left her only able to move her big toe on the left side. 20 days later, aria was coming off of several heart support medications, dialysis and a few of the IV lines.
Two days passed, Arias blood pressure dropped again and she had a severe GI bleed and she required yet again massive amounts of adrenaline. A couple of days later, she showed some progress. That was the fourth time we were “officially” told that she was not going to survive.
Three days after that, we were called at midnight and told that Aria’s blood pressure had dropped again drastically. Aria’s chest was not closed from her last surgery so the surgeon was able to look and see that she had a tear in her lung, he also added a stitch to her cannulas on her heart.
At this point, Brent and I were exhausted to our very core. Almost every single day for the past month, something terrible happened. The thought of “tomorrow” filled me with fear. I chose to live in the moment, and not a second ahead. The only thought of the future I had was the dream of playing at the beach with Brent and Aria. The thought of the immediate future and the possible things she may have to endure was excruciating.
I’m grateful to say that the next month, Aria was able to progress, heal and get stronger every day.
As her energy levels started to slow again, we mercifully received the call that there was a heart offer. I cried, filled to the brim with gratitude. The surgery went well and she was given a second chance at life.
The month following her surgery, there were more ups and downs which were typical for Aria, but we eventually went home. More than half of her life (244 days total) were spent in a hospital that we hold sacred.
Taking Aria home with a new heart and a second chance to live has been a gift that Brent and I cherish every moment of every day. The love that we have for Aria’s surgeon, doctors, nurses and technicians is something that we will forever hold dear in our hearts.
Six months later, because of the severity of her stroke, she has needed major rehabilitation to help her left side and her oral aversion (she has therapy 4-5 days a week) but she is now rolling, sitting up on her own and scooting around the house. We have daily dance parties, cuddle often, play all of the time and are enjoying the warmer weather that is upon us.
Aria is thriving. She is happy, sweet and full of loving energy. My heart and soul are filled with Joy, gratitude and thanksgiving.