Editor's Note: An amazing, but sad story. Make sure you have someone on hand to hug after reading this.
By Ashley B. Hudson
My daughter, Adiana Grace, made her emergence into this world on May 28, 2008 at 11:58 am, via cesarean section. She was a full month early. We’d planned the operation for June the 17th, but my little lady decided that she didn’t want to wait, and my water broke earlier that morning.
My husband and I tried for two full years before finally conceiving little Adi, and we were overjoyed to see that second line on the home pregnancy test. Can you imagine the excitement? There were so many things to plan, so many choices to make. Where would we live? Would we home-school? What about vaccinations? If it’s a boy, do we want to circumcise? All of these questions, and many more, were the subject of countless long and happy conversations.
The first obstetrician’s office visit was bittersweet. We got to see and hear our baby’s beating heart. I don’t think it had really felt real until that moment. It was amazing … knowing that tiny bean on the screen was my life, my future, my child. The visit was tainted, however, as we also discovered that I am diabetic. My sugars were quite high, and because of how early in the pregnancy it was, the doctors determined that I was not merely a gestational diabetic. I had no idea … this had never come up before.
They immediately started me on insulin injections, alongside a very restricted diet. I was told about the many problems that could occur during development if my sugars were not tightly controlled. It was quite scary, to say the least, and I was heartbroken. If only I’d known, I could have gotten it under control before getting pregnant. What if my condition harmed my baby?
At my 20 week ultrasound, my little one was being stubborn, and the doctors weren’t able to determine the sex. We were disappointed, of course, as we wanted very much to know, but still ecstatic, as everything checked out. Our baby was healthy! That’s all that mattered.
A follow-up ultrasound was scheduled for 30 weeks, as my placenta had been a little low at the previous ultrasound, and they wanted to check to make sure everything was in its proper place. It was then that we found out that we were having a daughter. We were both so thrilled! Though I of course would love my child just the same either way, I’d secretly been hoping for a little girl to dress up and, later, go shopping with. We’d had the name picked out for years: Adiana, meaning “the falling of the night reveals the angel’s beauty”.
My sugars were still wildly out of control. The doctors continued to up my dosage of insulin, and I continued to follow my diet to the letter, to no avail. It was frustrating, and terrifying. The obstetricians kept telling me that I needed to get it under control. They didn’t seem to understand that I was doing everything in my power to do just that.
Because of my high and uncontrolled sugars, they scheduled an appointment for a more comprehensive ultrasound at a specialist center about two hours away, at 31 weeks. During the ultrasound, I noticed that the tech repeatedly returned to the head circumference, and something didn’t look quite right. I also noticed that her head was measuring at 26 weeks, instead of around 31 like the rest of her measurements. When I asked about this, I was told that the doctor would talk with me about the findings. She was obviously uncomfortable, and left the room to get the doctor.
When she returned to the room, the doctor was in tow, and he requested some additional views before leaving, assuring me that he would be back shortly. I knew that something was wrong, and when he called me into his office, I found out that my suspicions were indeed founded. I took my husband’s hand as the doctor said “these things are never easy to say,” holding on for dear life.
Adiana had a form of neural tube defect, called an encephalocele. As her skull formed, it didn’t close completely, and part of the brain developed outside of the skull, in a sac covered with skin. This is a very rare and very dangerous condition, and her chances weren’t at all good. They sent us downstairs to do a fetal echocardiogram, to check out her heart and make sure that everything was working as it should.
It wasn’t. We found out that Adiana also suffered from HLHS - hypoplastic left heart syndrome - another rare and dangerous defect. Her left ventricle, the quadrant responsible for pumping oxygenated blood to her body, was incredibly tiny and not functioning well.
The doctors sat down with us and gently explained that her chances were not good at all. With an encephalocele alone, chances were slim, but with the additional presence of the HLHS, her chances of being born at all were next to none. We were told that she had a less than ten percent chance to be born alive and reach her first birthday.
We were absolutely devastated. How could this happen? We’d wanted a baby for so long. We did everything right. I quit smoking, I ate what I was supposed to, I was diligent with my insulin injections and my weekly OB visits. There are people who don’t want or appreciate their children … those people had no difficulties conceiving. They had healthy babies. What did I do to deserve this? Why did my daughter have to suffer? She deserved a full life.
She wouldn’t allow her Mommy to be upset for long, though. She started squirming and kicking inside me, and it immediately brought a smile to my face and love to my heart. She was my baby, and oh, how I loved her. She was still precious, she was still a gift. She was still special and wonderful and wanted and loved. It was then that I made a decision. I couldn’t waste time being upset, feeling sorry for myself, or pondering the whys of it all.
I needed to be strong for my daughter. I needed to make plans. I would make sure that she had the best possible chance for recovery. As we discussed our options with the team of doctors, I made it clear that I would do whatever I had to. I would ensure that my daughter got the best care, no matter what.
Due to her anatomy and the fragility of the brain matter contained in the encephalocele, we were told that the part of her brain contained in the sac would be damaged during a vaginal delivery. I of course assumed that this meant a C-section would be required. One of the doctors told me that she didn’t recommend a C-section, since the baby wouldn’t make it anyway.
I was outraged! How dare she? I informed her that I would have a C-section, and I would go elsewhere if that’s what I had to do to get my daughter here safely. Though I could tell that she didn’t agree with my decision, she acquiesced. As the weeks passed by, plans were made. The treatment for both HLHS and the encephalocele were surgical, so we scheduled the C-section and made sure that both a neural and a cardiac team would be available in the delivery room.
The morning after one of my routine visits, at 36 weeks, I awoke to my water breaking. The hospital where she was to be born was over two hours away, so we called ahead to alert the teams and got there as quickly as possible. My heart was racing.
I was petrified. My heart was beating so hard I was sure that the passengers in passing cars could feel it. Alongside the fear however, was a greater emotion: excitement. She would be here soon! This little precious baby, this tiny one who’d brought so much joy into my life, would finally be in my arms.
I was checked and prepped for surgery, and my husband came into the room to stand by my head. I couldn’t witness the moment she came into the world, as there was a large blue sheet between my upper and lower body, but I knew all the same. I was watching my husband’s face, and his eyes lit up as soon as he saw her. I heard her first cry, such a tiny little sound, and tears streamed down my cheeks. She was here! She was okay! She made it!
He went over to the table to see her, as they took her measurements, and then the nurse brought her over to me. She held her by my head and let me look at her for a few moments. I cannot find the words to adequately describe the emotions that coursed through my body when I looked upon my precious daughter. The most astounding love, the fiercest pride, and the most overwhelming joy that I have ever experienced. I was told that I would immediately fall in love with my daughter, but no words can prepare you for the feelings that you experience when you see your child for the first time.
She was taken down to the NICU, and I was taken to a recovery room. They needed to run some tests for which my husband could not be present, so he came into my room to stay with me. We didn’t have any further information at that point. It was all a waiting game, and a dreadfully scary one.
Later that afternoon, after I was moved into my regular room, the doctor in charge of her NICU team came in to visit us. He told us that she’d had a bit of difficulty breathing, and they’d placed a breathing tube to help her. He also told us the results of the additional tests that they’d run. Her defects were not operable. While her heart problem could be corrected, the only option available as far as her encephalocele would be to remove it … a cosmetic surgery. Her sac contained her entire cerebellum, part of her cerebrum, and a portion of her brain stem. Removal would render her a vegetable, with no quality of life. This was not an option for us. Why should she suffer just to prolong our time with her? It would be a selfish thing to do.
We were going to lose our little girl, so soon after meeting her. She wouldn’t have the full life that she deserved so much. We were heartbroken. The sorrow and despair that I felt upon hearing those words ripped my soul to shreds.
But again, I was determined. Her life here, no matter how long, would be full of love, positive vibes, and joy. I had to be strong for her, as she’d been so very strong for us. She made it here against all odds. She was a reason for celebration, not despair. This wasn’t a funeral, it was a birth! We would celebrate her life, and I would see to it that her short time here was as full as it could possibly be.
After discussing our options with the doctors, we opted to remove her breathing tube, and take her home with us under hospice care. We were allowed use if a special car seat that would allow her to travel without putting pressure on her encephalocele, and we brought her home four days after her birth.
What a wonderful feeling it was to have her home with us, with her family, where she belonged. No tubes, no machines, no cold hospital cribs. They’d told us that she may not be able to breathe, to eat, to cry. They were so wrong.
She was such a “normal” baby. There were no difficulties, no special needs or requirements for her care, besides being careful around the sac. Everyone came to see her. We held her, fed her, bathed her, dressed her, changed her diapers. We did everything that normal parents do. She looked at us, she cooed at us. We talked to her, sang to her. We took the greatest joy and pleasure from the most mundane aspects of parenthood.
With such a normal baby, such a normal setting, such a normal life, it was easy to forget that our time was limited. We were brought crashing back down a few weeks later, on the night of June 17th. My husband was on a diaper run, and Adiana was propped up on a pillow on the bed beside me, sleeping soundly, as I read a book there beside her. I glanced over to her and noticed that her coloring was a bit blue, but thought that it was surely my imagination. As I lifted her from the bed, her body was completely limp.
My stomach dropped. I ran for the phone, calling my husband telling him to get home now. I thought that I’d lost her, I was so scared, and sobbing uncontrollably. He was home within two minutes, and immediately took her as my shaky hands struggled with her prescription that we’d never had to use … liquid morphine. She took a deep and ragged breath against his chest, and I started to cry even harder, out of relief this time.
She woke up shortly after, crying and screaming. We’d already called hospice, and they arrived there shortly after. She started breathing normally, but every so often her breath would catch, and it was obviously painful for her. It took quite a few hours, peppered with small doses of the morphine, to calm her enough to get her to sleep. We were careful not to knock her out with the drug, only giving her enough to regulate her breathing and heart rate. As her pain lessened, her exhaustion took over and she sank into a fitful sleep.
The hospice nurse, having done all that she could, left us alone with Adiana. At this point, I’d been holding Adi for the better part of five hours, and the extreme stress was more than I could handle. I laid down on the bed beside her to take a short nap while my husband kept watch. Our intention was to take shifts throughout the night, so that someone would always be there watching over her.
I woke up when I heard a noise, to see him lifting her from the bed. I asked if he’d like to take a nap now, and he didn’t respond, just curled more tightly over her and began rocking back and forth, sobbing. With tears rolling down my face, I took her from him and held her tightly to my chest. She took one last, long, shaky breath as I held her, and then she was gone.
We waited a few hours before calling the funeral home to come and take her away. We just wanted to spend a little more time with her, just a few more hours. When they came to take her away, I feel to my knees. My arms, my home, my heart, and my life were so empty without her. It was an unbearable pain; blinding, sharp, surreal.
Once again, however, I knew that I had to be strong for her. She beat all of the odds. She was so strong. I refused to let her death be more important than her life. We made the arrangements ourselves, opting for a cremation so that we could keep her close to us.
Adiana is the best gift that I have ever been given. In her time with us, three short weeks, she taught me more about love, life, and what’s important than I’d managed to learn in 23 years on my own. I keep her urn in my bedroom, and I hold it each day. I think of her, and I smile. I know that she saved me, and I am forever grateful to my darling daughter for allowing me to experience the true and lasting joys of motherhood. I miss her, every second of every day, and of course I wonder what could have been, but I refuse to wallow in despair.
She is precious, she is loved, she is a wonderful gift … that will never change.