“They say that love comes in many shapes and sizes; but what they always forget to tell you is that love comes in many different abilities as well. For us, the ability of our child depends on a variety of different factors: the diagnosis, the surgery, the extent of repair and other medical procedures. Receiving a traumatic medical diagnosis of your child that you have longed for is tragic. It’s scary, it’s new, it’s research, it’s understanding. It’s loving what matters most.
July 2nd, 2013, our dreams had come true. We suspected pregnancy for the first time and within just a few hours, our suspicions were correct. Scared and nervous since it was our first pregnancy, we immediately went to the Emergency room. Unfortunately, two days later, tragedy struck our lives. We had been told we were losing our first child. I was told that I was expected to deliver our child naturally.
August 10th, 2013, I saw our baby for the first and only time when I completely miscarried. Within 24 hours, I was rushed to the hospital for an emergency D&C. My first surgery. The pain of losing a child is something that no one can explain to another. It’s unbearable, its life changing, it’s the most painful thing one can endure. It changed my family; my marriage and it changed the way that I love.
The following year my husband and I lost another child. We suffered a loss of three children in early pregnancy, which resulted in us visiting an IVF doctor. Not only one but two of them whom both told us the same thing. Unfortunately, we were unable to conceive and carry a baby naturally. We decided it would be in our best interest to start off with blood work to figure out exactly what was going on. A little over $1,200 later, we found ourselves in debt already from blood work alone. That wasn’t going to stop us from having the family we dreamt of, no matter how long it took. No matter how many times we’ve had a doctor tells us that we had a slim chance to none on getting pregnant and carrying to term, we never lost hope. Nearly every day for 5 long, painful and agonizing years, I cried. Until one day, a miracle was created.
January 25, 2017 just two months short of our last IVF appointment that consisted of blood work, we found out we were pregnant yet again, completely on our own. After days and weeks of testing and blood work we found out that our child, our pregnancy was completely healthy and progressing normally. Excitement took over us knowing that we were finally having a healthy pregnancy, so we told our family and friends. At my anatomy scan, about 24 weeks pregnant, we got devastating results, yet again. But this time, this time was different. We found our miracle child had a rare diagnosis. Our daughter, Ava Lynn Grace, was diagnosed with Spina Bifida. Not only that but we were also informed that she has hydrocephalus, built up fluid in her brain, as a result of Spina Bifida. Along with having Chiari Malformation type 2, another result in having Spina Bifida. Scared, confused and with so many questions, we didn’t know what to think. We were given the option of terminating our child, multiple times after giving her ‘possible’ life results. Not knowing what would factor in or how much it would affect her; termination is something we considered. Getting her diagnosis after telling the doctor how beautiful my daughter was, how much she was moving and how perfect she was, was an experience I never thought I would have. For the first time and the only time in my life, I had an outer body experience. I could see myself laying on that hospital bed when the doctor came in and told me that something was wrong with my baby and her brain. I saw myself wailing, screaming, crying and confused. Asking the doctors ‘What does that mean? Is she going to be okay’? After discussing the complications my child would have, IE; paralysis, bowel and bladder issues, cognitive delays, breathing issues and more, we soon learned about another option. Fetal surgery.
We found out about a new Fetal Surgery taking place in Florida, a surgery performed on babies before they are born, just two weeks before we met our deadline. It required an extensive amount of bloodwork, MRI, cat scans, amniocentesis and more. After a numerous number of tests, we found out that her and I both qualified for this surgery. At just 26 weeks pregnant, my daughter and I both underwent our first major surgery, together.
On July 2nd, 2018 five years to the day of losing our first child, we underwent fetal surgery. At Winnie Palmer Hospital in Orlando, Florida, both myself and my daughter had surgery to repair my daughter’s spine performed by Dr. Elbabaa. A world known Neurosurgeon with the hands touched by God, performed such an amazing and major surgery on my little girl. There’s no one more I trust in the world with my daughter’s life, to perform her surgeries, then Dr. Elbabaa himself. With the help of over 10 other doctors, nurses, anesthesiologist and more, they were able to come together as a team and work together on this life changing surgery. Being my first ever major surgery, they made sure I felt comfortable and had everything I needed. Shortly before they took me into the OR, I had first epidural placed to ease the pain when I woke. They had me on my hospital bed as they wheeled me into such an unfamiliar atmosphere where they then picked me up and placed me on the operating table. Diane held my hand as the mask went over my face to put me under, while I counted down from 100. I remember getting to 95 and I thinking to myself ‘It’s going to hit you any minute now but whatever you do, make sure you remain calm and try to remember.’ I remember looking up at the piercing white ceiling and the piercing white walls, surrounded by dozens of familiar and unfamiliar faces. Listening to the chatter and the doctor lingo back and forth. Thinking to myself, I hope my daughter and I both make it out of this surgery together. Before I knew it, I was out cold.
The life altering surgery had begun. Steady hands and curious eyes touched my body and filled the room. Dr. Greves started on his part of this surgery, performing my first c-section. Dr. Elbabaa then reached my placenta and sliced it open, of course replacing my leaking amniotic fluid, with warm saline water to protect Ava. He then got to my daughter and started on the repair, which was quite larger than anyone had anticipated. She was also missing skin on her back so therefor; he had placed a skin graft to finish closing. Once Dr. Elbabaa performed this miraculous and complicated surgery, Dr. Greves stitched me back up making sure my daughter was safely tucked away in my belly once again. Waking up was the hardest part for me. Waking up to a room full of family and love but I could hardly remember it. I could only remember crying in agonizing pain and griping my daughters cross that her grandmother had gotten for her. Once I was fully awake from being under, we started working on getting myself better. Trying to regain my strength and learning to walk again. Without getting sick every time I took a step, was the hardest part. They had me on breathing treatments and oxygen because I had fluid in my lungs and my oxygen was so low and shallow. My husband and nurses had to bathe me with a rag while I sat in the chair because I was unable to move without causing myself pain. Exhaustion had taken over my whole body, for days I slept. Until one day, I got up and I never went back down. I spent 5 days in the hospital after my surgery until I was finally discharged, being told I had to stay close to the hospital in case I went into early labor. Two days later, I found myself being admitted to the hospital, once again.
My water had broken just two days after being discharged from the hospital, thus keeping me hospitalized until I had our daughter. Having the support of my mother, friends and family, I was able to remain pregnant for another three long weeks. I lived in the hospital nearly a month after my water had broken, with the same four walls, the same hospital food, the same movies playing. Contracting left and right and constantly taking medicine to get stop my labor and ease the pain. There were days when I couldn’t get up from the bed, days where I couldn’t bathe myself anymore, days when I screamed so loud from the contractions. My mother would help me to the shower, sit me down on a chair and run warm water all over of my body as she washed my hair. There were days I couldn’t get up to use the bathroom on my own, I couldn’t stand without collapsing. I was tired, I was weak, I was exhausted, I had lost all of my strength. Until that night our daughter decided she wanted to be welcomed in the world. At 30 weeks and 2 days, shortly after midnight, I went into full blown active labor and there was just nothing anyone else could do anymore to stop Ava from being born. I had started to time my contractions, 60 seconds part and lasting for 30 seconds. Screaming, crying, begging them to take her out of me for hours as I continued to contract on my freshly stitched c-section. It was happening so fast, hooking me up to IVs, whipping my whole body down preparing me for another c-section, throwing up every few minutes, trying to place another epidural, arms burning from magnesia flowing through my veins.
August 1st, 2018 at 8:06 am our beautiful daughter was born. Weighing just 3 pounds and 5 ounces, 15 inches long, this miracle child was born not only breathing on her own, but she was born wiggling toes. Our daughter, whom we were told might be paralyzed, was born with full feeling from her waist down, wiggling her tiny little toes.
The NICU had become our new home for the next 87 days. It was one giant roller coaster ride for us. The ups and the downs. The butterflies in your stomach once you reach the top and your heart dropping when you’re going down so fast you just can’t catch your breath. Ava overcame many milestones in the NICU as she also continued to fight her life every day.
Contacting late onset group b strep at 6 weeks old, sent her spiraling down faster than anyone could imagine. I was told my daughter was deteriorating way to fast and way too much and if I wanted any family to come see her, I needed to call them. Wailing in pain and heartache I heard the words a parent never wanted to here, ‘We don’t know if she is going make it, but we are doing everything we can’. I thought to myself that she had to pull her though, she had been fighting for so long and had been through so much already that she had to overcome this too. Rushing into my daughters’ room and seeing them placing her back on oxygen, multiple different machines, which none of them seem to work, was heart wrenching. I watched as they rushed her into another part of the NICU for extremely sick kids so they could take better care of her. As soon as she got into the room, they started chest compressions as they placed a mask over her face to keep her alive long enough until they could hook her up to a ventilator. For days her father and I sat by her bedside, crying, praying, begging, loving her and kissing her for it could have been our last time with her alive. Until a couple days later, Ava had woken up and was breathing on her again. For 87 days our daughter fought for her life in the NICU. From breathing machines, jaundice, brain MRIs, cat scans, spinal taps, PICC lines, ultrasounds, echo’s, eye exams and more. This little girl fought a hard fight until the day she came home in October 27th, 2018.
Coming home from the hospital was an adjustment in the beginning. From having in home weekly therapies to dozens of appointments over an hour away. We started physical therapy almost immediately and the outcome of it has been a joy to watch. Just a few weeks into being home, Ava fell ill all over again. Catching RSV, flu, pneumonia and more, she continued fight a little more. In May of 2018 Ava had her second surgery, an ETV/cpc for her hydrocephalus. If untreated, it can be deadly. So, they created a small opening in Ava’s ventricle in her brain, to help the fluid drain. Unfortunately for Ava, it wasn’t working the way we needed it to so once again, Ava underwent another surgery. Her second brain surgery before the age of one. In March of 2018, Ava had her shunt placed and from the moment she woke up, we noticed a positive change in her. She finally started to sit up on her own. The days spent in the hospital after both of her brain surgeries was very hard on my family. Watching our daughter in pain, screaming, vomiting. However, seeing her progress made it worthwhile. We still continue to receive physical therapy for Ava and she also gets occupational therapy and speech as well. From being told our daughter may never walk, with the help of therapy, she has started to take her first steps recently. Ava continues to hit her milestones at her own pace, and we couldn’t be prouder of her.
Fetal surgery is not a cure for Spina Bifida, there is no cure for it. But for my family, it was the right decision and it has changed our lives in so many ways. Rather a child gets fetal surgery, or they wait until after birth, every child has a different outcome. This surgery has changed my daughter’s life, it has changed her future. We are so grateful that we were able to have received such an amazing surgery for our daughter. It has been one life altering and miraculous journey and we would do it all over again. Our daughter is nearly 17 months old and she continues to defy her odds and prove many, including doctors, wrong. She’s fearless, she’s brave, she strong, she’s motivated. She is a Twice Born miracle.”
This story was submitted to Love What Matters by Erika Reyes, 27, of Polk County, Florida. Follow her family journey on Facebook here and Instagram here. Do you have a similar experience? We’d love to hear your journey. Submit your own story here, and subscribe to our best stories in our free newsletter here.
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