Tuesday night. October second. I found myself doing one of my least favorite things. But yet there I was…again.
I knelt on the clean tile floor with a sobbing woman bent before me. And as I spoke softly to her, her tears spilled to the floor and threatened to reach the place where I sat. I tried to explain what was happening in the next room but my own uncontrollable tears made the task difficult… I prayed silently for strength, that the words would come gently. With love!
But she knew. She already knew the words I was trying to form. She knew why I had left my position by her daughter’s bed and emerged. She knew I had come to inform her that her baby girl was dying.
She knew because just hours earlier she witnessed chaos erupt. She heard the monitor’s alarm sound. She had been rushed out as we all rushed in; the moment her tiny baby of only 2 months stopped breathing.
That moment marked the start of a journey. A journey that I do not desire to take again, but a journey that I wouldn’t trade for anything of this world…
After only 5 days with us, Ruth, more commonly known around our house as “Mamma Petra,” was about to experience the most horrible and unforgettable thing a parent can ever go through. And as I sat there in front of her, I couldn’t make the words come out. I couldn’t tell her, a woman I hardly knew…yet my heart was so heavy with sorrow for. I looked up at her tear stricken face and in that same instant she looked me right in the eye. It’s as if she could see into my brokenness and she simply said “Thank you”. That’s when I knew. She already knew.
I still did my best to describe what was happening around her. I explained that for over 30 minutes her child had not breathed; that we had to help her every breath. And that she was completely unconscious and unresponsive. I explained that while her heart was still beating, it was probably only a matter of a short time before her body would become too weak and shut down completely. I repeated over and over, I’m sorry, I’m sorry, I’m so sorry.
30 minutes turned into an hour. An hour into almost 2… Bagging constantly. No breathes.
Finally Mama Petra gathered enough courage and she walked through the door where we were all hovered over a small bed. Her eyes widened; she looked around at all the people. Equipment and papers littering the room, medications of every kind scattered about. When her eyes found and locked on her baby…that is a moment I will never forget. She walked closer and looked frightened at the sight of her child. Frightened by the mask engulfing her face; horrified by all the tubes and cords attached to her frail body. She seemed to not have any words. A few minutes passed. Nothing. I broke the silence with a whisper, “Can we pray?”. Slow nods were seen from every direction.
As we gathered around the small hospital bed, we continued to fill her tiny lungs over and over with hand-operated oxygen. I began to pray aloud. Not praying for a “miracle” necessarily, but just for God’s presence to be felt among us. For his purpose to prevail in the life of Petra!
In less then 15 minutes the baby before us began to stir. Then right before our eyes she started to breathe on her own!
10 minutes later she stopped again. Moments later she began taking breaths once more. This continued all night. And all the next day, and the next. We watched continually, every minute we observed her small chest rise and fall; literally every minute, waiting for her lungs to give out. And they did, again and again. But with some assistance and heavy prayer the rise and fall would begin again, and again and again. Every time I reached for that bag I felt sure that she had taken her last breath. And every time God would whisper to my heart “Not yet. Still again.”
We settled ourselves in, thinking that we would pour into this tiny life for another day or so, but all the while knowing that in the end God would take her. It didn’t seem possible for it to end any other way.
One week passed by. Baby Petra still occupied a crib in our clinic; still on heavy oxygen, intense feeding/medication schedules and around the clock monitoring. But still alive!
2 weeks passed. The same; no improvement.
Baby Petra saw numerous Doctors, as well as a Physicians Assistant from America who was living and working at Serving His Children at the time. We were baffled. How her little body was still holding strong was a mystery. And why her body in this state to begin with was an even bigger one. We were dealing with things far beyond malnutrition, but what? She constantly needed blood transfusions. Her lungs were unable to handle breathing without the support of oxygen for more then a few minutes. And while she wasn’t in a coma anymore, she barely moved at all. What were we missing? We ran test after test…but nothing stood out.
So we continued doing what we knew, and had been instructed to do…
Day in and day out worship music would float out the door of the clinic. This might sound crazy, but that little girl seemed to be so sensitive to the Spirit. She loved music, and would calm at the sound of soft prayers spoken aloud over her!
I remember one day I was called down to the clinic in the middle of the night, I happened to not already be there…. When I reached the door, before even entered I was met by the sound of water bubbles; lungs completely full with fluid. So loud that I couldn’t even hear the sound of her heartbeat. Fear found me in that moment. I felt in the pit of my stomach, that this was it. This was the end. I carefully picked up her weak little body in my arms, kissing that beautiful little head of dark curls and breathed a prayer of praise. In that instant the sound silenced. As if the liquid that threatened to drown her just evaporated into thin air. I was awe-struck. Uncontrollable tears flowed. Amazed by the power of words simply whispered unto God, privileged to witness the miraculous works of the Most High!
Things like this continued to happen. God performed literal miracles everyday to keep this girl alive. Everyday! Everyday He would do something completely miraculous, just to remind us “Hey, don’t worry., I’m in control. I got this!” If I tried to tell you all of the things God did, I feel confident that you would not even believe me. I almost don’t believe it myself.
Finally, we braved Kampala (the Capital City) in hopes of finding more solid answers. We took her to one of the best private hospitals in Uganda and did a whole new workup as well as saw several Specialists. But by the middle of the day hope was dwindling. No one could find anything substantially wrong, don’t get me wrong, they were all shocked by her condition, and after briefly reading through her file they were incredibly perplexed. But still no idea as to what was causing her to be “stuck” in this state. Until we saw the last Doctor of the day…. Literally the minute he came in and saw her he said, “Oh, she has Fanconi Anemia”. He had read her extensive file prior to entering the room so he was aware of her constant need for blood transfusions and all her past history leading up that very day.
He explained what Fanconi Anima actually was, and we were devastated. It is terminal and the prognosis for life expectancy is very short. The only way to give her more then a couple weeks was to have a bone marrow transplant. That procedure is not done in Uganda, nor would she have been able to withstand the surgery, even if it were possible. Everything about her condition pointed to Fanconi, and we started coming to terms with what we had just been told.
We were advised to take her home and try to get her to a point where she could return to her actual home, and let her live her last few weeks there, with her family.
So that day, with heavy hearts, we drove back to Jinja. Hope fading into the distance…
Days went by. Then days turned into weeks. There were ups and downs, of course, but things seemed to remain the same; “Stablely Unstable” as we called it. We were all exhausted; worn to the very core, emotionally and physically. We were in what felt like a constant uphill battle for the life we so tenderly devoted our days to. Sometimes I felt like God was just using Petra to test my strength,, and observe my level of perseverance…
With weary hearts and bodies, one again we continued.
We kept fighting. We kept praying. Daily lifting this precious child up to the throne of our Heavenly Father; the God of healing! We were even joined in the fight by hundreds around the world, interceding on behalf of a small child that they had never even met. If that’s not humbling I don’t know what is.
Day in and day out worship music floated softly out the door of the clinic. This might sound crazy, but that little girl seemed so sensitive to the Spirit. She loved music, and would calm at the sound of soft prayers spoken aloud over her!
Sticky notes with scripture written on them started to appear on her bedposts. And then quickly began to grow in number. As we prayed, we wrote scripture. Literally covering her in the word of God; holding fast to its promises!
It started to get harder. I had given everything I had to this small child, and I was so weary. I cried out to God-out of desperation, and also pure exhaustion. We were doing everything we possibly could, but there was very little improvement. And always just when we felt we were making headway, she would take a major dive for the worse and then slowly (or sometimes not so slowly) she would climb back up again to her “stabley unstable” state of existence.
We were on a continual emotional roller coaster…
31 days after we began our journey with Petra, it was decided that we would transfer her to the large government hospital in Kampala, “Malogo”. I for one was extremely uneasy about the situation, but it seemed like the only option we had left. In Malogo she would have the chance to be seen by medical professionals from all over Uganda, and there was that small possibility that someone would know more about her persisting condition.
With Petra having been off oxygen for 2 days, we made our way back to Kampala with slightly more ease then the previous trip. She was quickly admitted, and from there was moved from ward to ward, being assessed by numerous Doctors. Still, no conclusive answers were found… 3 weeks later we were told to bring her back and continue her treatment plan from Masese.
That day as I pulled our SUV through the big red gate that marks the entrance of Serving His Children…Petra and mom beside me. As I parked and turned of the engine my eyes wandered over to Mamma Petra… Her smile reached all the way into her big brown eyes again. She was “home”. Her baby was alive. Her heart was full.
There was a joyous eruption that took place when Mamma Petra emerged from the car! The same community of people who had so faithfully stood beside this mother during times of great despair were now full of joy!! The very ladies who had sat beside, prayed for, and wept with her now leaped with gladness. The same audience who watched her hope every morning that God would give her just one more day with her child, they were now welcoming her back with great excitement! Smiles were spread wide as the celebration continued!
And the rest, well it's history...
Petra and her Mom stayed with us for only another 2 weeks before it was determined that she was fit to return home! We could all hardly believe what we had seen. What we had witnessed. We have only to praise!
The evidence of miracles!
It’s been almost 4 weeks since we waved goodbye and watched Petra and her parents walk back out through that very same red gate, discharge paper in hand. And I have to say; my mind still doesn’t fully comprehend what transpired in those months. I sit here at my kitchen table and think back on all the moments of fear, confusion, and fatigue that often marked the path of Petra’s days here. I would sit up all night on a stool till my back aced, praying for God's favor. But above those things, I remember the peace that was ever present in my heart. I flip through her rather large file and hold back tears. I see the bed that was once hers. Now empty...but only empty in the physical sense. Still filled on all sides with little colored paper squares. Scriptures written. Promises made.
"Let us hold fast the confession of our hope without wavering, for he who promised is faithful"
A promise held true!