Babies come in all colors and sizes. Some are born quickly while others take their time arriving. Some babies are free of medical issues while others are riddled with one problem after another. One such baby was born in April of last year.
She was born on the 15th and placed in my best friend’s arms on the 18th at the start of her adoption process. As the first week went by, my friend discovered the baby had several congenital heart defects that were going to require immediate monitoring, several evaluations and what would end up being a lengthy hospital stay. The baby had only been home three days with her forever family before being admitted to the hospital and later life-flighted to another. This story may sound familiar to some of my long-time readers because I introduced this child to you to you on Easter morning last year. It seemed appropriate to do so because her story reminded me about celebrating the chance to hope. Not all of us can muster energy to celebrate anything as autism consumes so much of our lives. But to go out and grab some hope for someone else? I always will.
When I wrote the story, I asked the Age of Autism community to remember how precious all life is and to please offer some healing thoughts and prayers for this child. The baby was going to need lots of them. She required much more medical attention than any of my children ever had. My friend called me with questions hoping I could give her some advice. She confided in me her fears. We got through some rough times together, and I was always in awe of how my friend remained faithfully strong despite how terribly frightened she was.
The baby needed round-the-clock care and medications I didn’t know how to pronounce. A few touch-and-go moments occurred and open heart surgery was eventually required, but the baby pulled through and grew stronger. I was grateful to peek into this little life and to hear how much she touched the lives of those who loved her and of those who cared for her immediate medical needs.
Homecoming - Take 2
In the early summer months, the baby was released from the hospital. What a homecoming that was! I breathed a huge sigh of relief knowing how blessed that child was. The family was grateful for this chance to come home again. They came home renewed and with a changed routine - one that allowed them to tend to the baby as better "heart baby" parents. Starting life again with their new normal, they maintained weekly appointments with several providers. Follow up care was a priority, and the family had been blessed to find knowledgeable doctors the first go round. They continued to learn a great deal for their daughter and tried to stay attuned to any changes while keeping her healthy.
Knowing the baby was in good care helped ease some of the stress the family and her extended supporters had. We were all filled with joy and thanksgiving knowing the baby defeated many odds. Being able to celebrate such a wee life again was overwhelming emotionally. She instilled a great amount of hope in so many, and to experience that was truly fulfilling.
But then the baby gave us a scare. She was having a difficult time eating, throwing up more than usual. Her breathing became even more rapid than normal. My friend knew that something was not right. She quickly took the baby in to be seen by her cardiologist, and it was confirmed that something was indeed wrong. Another admittance to the children’s hospital was arranged, and the family set out again to get the medical help the baby needed.
The first two weeks back at the hospital were difficult, with so many questions on how to proceed, whether anything could be done, whether she could even be saved. When a plan was finally put in place, the family became more optimistic. But as time moved on, the situation became more and more bleak. Her heart just wasn’t strong enough. The heart defects she had also caused issues with her lungs. Many remained prayerful, and more people were invited to join the fervent, constant and purposeful prayer for this little girl. When the baby was readmitted for these new complications at the end of the summer, we all promised to get back on our knees.
The family had no idea what to expect. Trying to have phone calls with my friend was difficult, what with the baby being hooked up to several tubes and monitors while medical personnel came in and out of her room at all hours. It was easier to email, text or wait for a message than to try to have a full-fledged conversation. My friend got creative and started snapping pictures of the baby’s message board to give quick updates. Her light-hearted, snarky sense of humor combined with some optimism had a way of easing some of the worry we were all afraid to talk about.
When the baby was admitted again to the PICU for closer monitoring, those of us who kept the family in our thoughts were confident that the baby would get through it. Her heart was very sick, but she’d beaten the odds once already. Since a second surgery was not an option, the hope was that the baby would receive a heart transplant. She was placed on the transplant list, and we waited for healing and a new heart. That was the new plan – to wait, to pray, to hope.
Despite her grave situation, the baby brought smiles to everyone—therapists who worked with the baby, nurses and doctors who monitored the stats, and extended family who took time off to visit her. You’d never see the pain in the pictures my friend would send with her prayer requests. Oh, how that baby smiled! Bad days crept in, though. As time went on those bad days stretched into long, dreadful weeks and months.
More problems arose for this baby, and we were now officially begging for healing, for more time and for a miracle. Hopeful prayers turned into desperate pleas. Every day held high emotion. Were there any changes? Have any new tests been done? How do things look today? Can anything else be done? No, no changes. Nothing new. We’re still waiting. Waiting for a heart. Keep the prayers coming. Please find some hope and send it her way.
I began to feel physically useless as I was miles and miles away from the family. I wanted so badly to do something besides pray. But there was nothing else I could do except be ready to support my friend from a distance. I promised to be a phone call or text away.
Soon into the second hospital stay, we shared more calls, these about vaccines. Of all things. “Cat, they want to give her vaccines.” What? Vaccines, like more than one…why? Which ones? She’s hooked up to tubes and is on some serious medication right now. Her heart is failing and who knows what else her body is going though. What on earth is their reasoning? She continued, “They said a few of them are for her to “catch up” since she missed some at two-months.”
I had to restrain myself from calling the hospital directly. My friend needed advice and support. How does she ask the doctors to back down with the vaccination demands they were pushing on a medically fragile child who clearly had enough going on in her little body? At this point my friend was exhausted, emotionally drained and in constant worry if her child’s heart would be strong enough to make it through the next day. On several occasions the doctors tried to talk my friend into giving her baby vaccines in preparation for when a heart became available because many vaccines cannot be given to post-transplant, immunocompromised patients. My friend hadn’t had a good night’s sleep in quite a while and was just so tired. She was most worried about her baby’s heart - not about what vaccines she missed several months ago.
I suggested that she listen to the doctors and their reasoning but also fire off some important questions that I was going to send her. The first question would be “How is vaccinating a baby who was having fevers and increased infections logical?" I added, “Tell them to back the heck off."
It was about 3 weeks earlier that my friend stopped calling altogether. We now only communicated by text—it was easier for her to send quick messages throughout the day instead of having to hang up every time a specialist came into the baby’s hospital room. We sent messages back and forth—updates from her and constant support from me. I respected the privacy the family needed and was asked to be the point of contact for other family and friends and to send out any updates. Having that role humbled me. I had to be strong enough to deliver the news which was now growing worse and worse.
The baby had been back in the hospital for four months at this point. It was early winter. Her heart worsened; other systems were being affected also. I started to hear less and less from my friend by phone and now felt fear thinking about the baby’s situation. Our once daily texts and emails went from daily to every 2 days and then every 3 days. A gripping fear, one that I’d never experienced before, entered my thoughts. Fear of the end being near. I willed those thoughts away.
Around 8:47 p.m. on December 22, my phone rang. I knew who it was. I know why the phone rang. I didn’t want to answer it. When I did I heard, “Cathy….” She didn’t have to continue but did. “She’s gone.” I couldn’t say more than, “No, no, no, no. NO!!!” How could this happen? How could this truly be the end? This child. This baby. This hope so many held for her. Her short life ended just days before Christmas 2011. In eight short months she helped teach us how to truly love, live and fight for life. Eight months so young. Eight months too short. Eight months of being surrounded by her immediate family who loved like they never had before. Eight months of knowing only love.
Today is Easter, a day on which many of us believe in and hope for new life and the Resurrection. Today I ache for a different type of hope—a hope that cannot bring a precious life back but can maybe restore some of the loss I feel for my friend’s daughter in my heart. As you gather with your family, either in a formal church setting or in a simple family get together, please hold them close. Then, hold them closer. Today you have the chance to be together and maybe even mend broken hearts from your past.
Being strong enough has a new meaning. The news of the baby’s death is still so raw, so unexpected, so devastating. I’ve cried until I can’t cry anymore. I think I might be able do this, this grieving and believing some of the sadness can go away. I know it never completely will, though, and that it’s going to take a very long time to heal.
For all the joy you brought us, through all the pain we will learn to live with , as you enter your eternal life, please pray for us. You made us dream big dreams; please remind us how to live. Help us to remember to hope. Inspire us to hope for something better. You touched many lives in many circles of many friends. With gratitude and peace, may you always be forever loved and remembered.
Cathy Jameson is a Contributing Editor for Age of Autism.