I first met Grace just a few months after I arrived in Togo. Her father Komi, who helped out in our lab at HBB, brought her in one day looking very tired, sweaty, and weak. Her heart was beating at 220 times a minute! (normal for her age would be around 80) When the heart beats this fast, it actually doesn't have any time to fill up with blood and is essentially useless. I knew she was suffering from SVT (Supraventricular Tachycardia)--a problem with the electrical system of the heart. There are 3 treatments for this condition: a medication called Adenosine, a Vagal maneuver (ice pressed to the face or bearing down like you are going #2!), or shocking the heart. I knew we had some Adenosine but it was expired. I went to the doctor's office to get it and had them put an icepack on her face while waiting. After about 5 doses of Adenosine and NO sign of the medication changing the rhythm in the least we were running out of options. While debating whether to shock her heart, she had a seizure. While the seizure wasn't good news, it actually put her heart into a normal rhythm. After about 30 minutes she woke up smiling and giggled a bit and wanted to see her brother, Elizae.
After everything was calm, I flipped through her very thick medical chart and noticed that Grace had been diagnosed with this condition several years before, along with another structural heart problem. An heart echo done years before showed that she had an open PDA, which is a vessel that is open in-utero so that blood can bypass the lungs (since the lungs are filled with fluid and don't "breathe"like normal). After being born, this vessel closes.....or at least, is supposed to!
Grace went home after 2 days in the hospital and some treatment against malaria. We increased the medication she had to take every day at home that tries to keep her heart from beating too fast. The thoughts about exploring possible surgery in the US crossed my mind, but I wasn't ready to further explore things as I was still a novice in the Togo medical world. I knew that I was dealing with a very special little girl, as I had never seen a child so filled with spontaneous joy. There was no doubt that she carried with her the joy of the Lord everywhere she went.
A few months later she came in again. Same symptoms, same worried look on her families faces. After proving once again that Adenosine and ice packs weren't changing a thing, we shocked her heart. Immediately she opened her eyes wide and giggled, then reached out for her brother. I didn't need to look at the monitor to know her heart was beating well again.
A few months passed and other admissions for her came. Each time she also had malaria, which is rampant here in Togo, and likely served as a trigger for her SVT. Each time we either shocked her heart back into rhythm or she would end up vomiting or seizing--none of which were long-term solutions!! Although I had been in contact concerning Grace's on-going care with my kind former colleagues at Kosair Children's Hospital, plans for searching out US surgical options were still put on hold as another employee's daughter was unexpectedly diagnosed with a Brain Tumor that needed an emergent operation. (see blog posts "Berna part 1 and 2") Thankfully through the experience with Bernadette, we make contact with an US based charitable organization called Healing the Children. HTC helps find and facilitate finding surgical options for sick children all over the world (www.healingthechildren.org).
Near the beginning of 2013, we started more actively trying to find out our options for getting Grace overseas. Even with the help of HTC, we kept running into roadblocks as many US hospitals are not taking as many surgical charity cases due to budgetary cutbacks. Also, due to Grace's problem not only with structure, but the electricity component of her heart, her surgery required a special electrophysiology lab. Through some contacts at Kosair we were able to find a willing and capable surgeon in India. The cost of the surgery was still going to be around $8000 which I knew was VERY CHEAP in comparison to what actual cost was, but also a lot of money for both us at HBB and for the folks at HTC. I also just didn't feel like that's where she was supposed to go, so we waited.
I knew the longer we waited, the more danger she was in. Her heart already showed changes of beating too fast on a daily basis; even on medications her heart rate was around 120. Our friends at healing the children had some leads. My home hospital Kosair was a possibility but had already committed to taking a young child from Pakistan. They said if things fell through though, the might take Grace. Of course, I couldn't pray for the Pakistani child's case to "fall through"as I was sure he needed help just as much as Grace did. So we waited.
Meanwhile, Dr. Ed Fitzgerald, an adult cardio-thorasic surgeon from Indianapolis started advocated for Grace. Dr. Ed has done an incredible amount of work to help us here at HBB, including frequent visits to come and serve here (even with C-sections! How many CV surgeons can say they know how to do C-sections!) With Dr. Ed's connections he started making phone calls all over the country. We got word that a surgeon Texas Children's was willing to help us out, but it needed approval from the board. I told Grace's dad that we were getting close and we needed to start getting identity papers for Grace. (In Togo, you can't get a card that shows you are a citizen without going through some major paperwork and paying fees. Only after you have that card can you start the passport process).
|Komi, Grace's dad, working in our lab|
Our friend Dr Ed went to work on trying to find hospitals that would take Grace and Komi!! The possibility of Texas Children's was moving forward and we had some hopeful leads on Komi's chances as well. Sadly, about 4 weeks later, Komi had another cardiac arrest while playing with his children and died a few hours after arriving at HBB. The devastation overwhelmed everyone at the hospital as we all remained in a state of shock. How could this happen to a joyful, Christ-serving, healthy young husband and father? What was there to say to his young 29 year old wife and 2 young kids? I pleaded with the Lord to open a door for Grace, so that her mom wouldn't have to bury another family member.
The e-mail came 3 days after Komi died. Dr. Ed sent word that Riley Children's Hospital in his hometown of Indianapolis had accepted Grace and surgery would be on Dec 10th!!!! PRAISE GOD! The date of surgery was firm and couldn't be moved. I knew we had A TON to get done, including passports and visas in only a month's time. But while this news was a huge blessing, how could I ask Grace's mom to let her leave for the US, to get a surgery on her heart, when she hadn't yet buried her husband? Grace's surgery wouldn't require opening her chest, or a long stay in the hospital, but it isn't without risk. At Komi's funeral I watched as a family friend carried Grace on her back. It was the only time in 2 years I had ever seen Grace without an infectious smile and laugh. I knew her only chance was to go.
|Grace with her mom and beloved brother, Elizae|
|Bernadette (middle) with her mom, dad and sister Jeanette|
I know there are sick children all over the world who die from lack of access to care like we have in the US. We take care of those kids everyday here at HBB, and I spend many nights fighting against despair and questioning God's ways. But then I see, that in His kindness and sovereignty, God chose to provide for these 2 children in a miraculous way. We can ask, "Why not those others?" or we can choose to say, "Thank you for saving them." Isn't that what Thanksgiving is? Recognizing that we deserve nothing and each thing God provides for us, from surgery to our very breath, is a gift from the Lord.
Yesterday, I tried to explain Thanksgiving to some Togolese friends of mine. "It's a day when all American's spend with friends and family to give thanks." One Togo man said, "I don't understand, don't you give thanks to God everyday?!"
Amen my friend. Amen.