We’re en route home from Mongolia and, as is tradition, I’m writing an update. We usually do a big trip to Mongolia every Fall with a Searching for the Broken Hearts week, a Mending the Broken Hearts week, and a team of at least 50 people. This was a short trip with a small team: Kirk (peds cardiologist and team leader), Mary Porisch (peds cardiologist), John Kupferschmid (pediatric heart surgeon), Bart Hensler (perfusionist—runs the cardiac bypass pump during heart surgeries), and me (anesthesiologist). We were missing one team member, Minette Son (pediatric intensive care doctor), who sadly couldn’t join us at the last minute. We were only in the country from Friday night to Wednesday morning. We performed three heart surgeries and three cardiac catheterizations. We went on this quick trip to fulfill some promises.
Instead of children, we actually operated on adults this time. All three had congenital cardiac defects, meaning they had heart defects they were born with. They just weren’t diagnosed until later in life. We had a smaller team this time because we had promised to come help the Mongolian doctors operate on these patients. In the four years we’ve been doing these surgical trips, we’ve been doing lots of training and have watched the Mongolian doctors and nurses come a long way in their proficiency. We usually duplicate each and every member of the team required in the U.S. to take care of heart surgery patients, which results in us having up to thirty people on our surgical team. On this trip, the Mongolian medical team took the lead, with us just offering assistance. It was so gratifying to see how far they’ve come, from doing surgeries without cardiac bypass and with an approximately fifty percent mortality rate four years ago to becoming proficient enough to have done almost fifty bypass cases in the last six months with a less than five percent mortality rate.
There a great stories regarding all three adults and how we came to be involved in their surgeries. The first was the father of a girl, Anujin, who we operated on two years ago. We met her three years ago when Kirk diagnosed her mother with inoperable congenital heart disease. She asked Kirk to examine her daughter and he found she had a hole between the collecting chambers of her heart (ASD or atrial septal defect). He promised her then that we would operate on her the following year and she was our first surgical patient two years ago. She came back last year for follow-up and her father mentioned some concerns about his heart. Kirk examined him and found that he had the same defect his daughter had had. Our promise to operate on him was the reason we planned this trip. The second patient was the niece of one of the Mongolian operating room nurses that we have worked with over the last four years. She also was diagnosed with an ASD by our team last year and we promised to help with her surgery too when we came to take care of Anujin’s father. The last patient’s story is a little more involved.
Shinebayer was diagnosed with heart disease by the Mongolian doctors two years ago. Her family had the means for her to go to Hong Kong to get an echocardiogram (ultrasound of the heart) to confirm her diagnosis, also an ASD. Her family then began seeking help from various NGOs (non-governmental organizations) for her care. They had even found a hospital in Utah willing to perform her surgery, but she was unable to get a U.S. visa. One of the organizations they had written to was Samaritan’s Purse. Kirk was able to see her last year and confirm her diagnosis. She had proceeded to look for ways to have her heart surgery outside Mongolia. She had just been accepted by a hospital in Korea and was going to be able to travel there by herself, without any family members accompanying her, if she could cover her own travel expenses. She was debating this option until just last week when a member of our team called her and offered our help. Shinebayer’s sister-in-law speaks excellent English. She took us out to dinner as a thank you and it was wonderful to hear firsthand all the details of this story and the tremendous gratitude of Shinebayer and her family. They truly saw the hand of God in all the circumstances of her story.
We operated on all three adults on Monday. Each trip we seem to get blessed in being part of something historic in Mongolia. This day was historic because it was the first time they had ever performed three cardiac bypass cases in one day there. This would be a strenuous schedule even by U.S. standards. All three patients did well. They were able to have their breathing tubes removed in the operating room so did not require any time on a ventilator in the ICU. It was wonderful to see all three of them sitting up in bed first thing Tuesday morning and walking around the ICU by Tuesday afternoon.
There are always lessons on every trip we take. As I said, we arrived Friday night. We went to the hospital on Saturday morning to meet with the three patients for Monday. Then we spent Saturday afternoon screening more children for heart disease. This is a regular part of what Kirk and the other pediatric cardiologists do on every trip to Mongolia and the main focus of our annual Searching for the Broken Hearts trips. I, however, am not usually involved. As the anesthesiologist, I’m usually involved when it is already decided what children need procedures. Now, I have been involved in the past and, of course, I’m married to the primary screener, so I’m not ignorant of the process. It’s just easier to escape the emotional burden by not being primarily involved. I was already thinking on Saturday afternoon how good it was to be there and how slow I am to learn the lessons that the Lord must teach me over and over again. I know how good we have it in the U.S. and how incredibly blessed we are, but I have to stare the alternative in the face again and again and again to be reminded.
On Saturday afternoon alone we saw at least three babies with severe enough heart disease that they are likely to die soon without intervention. There are not more of these babies born in Mongolia than in the U.S. They are just diagnosed and treated in the U.S. in a timely fashion. Many children in Mongolia go a long time without diagnosis or have few treatment options if they are diagnosed. I have already told you they have come a long way in Mongolia, but they are still able to perform surgeries on the simplest of cases and on patients usually above about forty pounds. There are not a lot of options for the littlest and most complex cases. I know this. I know it goes on there, and a lot of other places in the world, all the time. But I don’t have to see these beautiful baby faces and the tear-filled eyes of their parents who so apparently love them. Kirk does and, once again, it gives me so much appreciation for what he goes through as our team leader.
These situations introduce a horrible dilemma for us who are there as team members. We have the overwhelming desire to “do something.” With the five of us who were there, it is easy to consider taking these children to the operating room or to the cardiac catheterization laboratory. But a simple procedure is such a small part of the process. We went on this trip planning to do three adult ASD cases. That is what we had the supplies and personnel to do safely. We did not have the medicines, supplies, personnel, or even time in the country to take care of all these babies safely. A surgery or a cath is one thing, but it is often the post-operative care in the ICU that determines whether these children live or die. We had no ICU doctors or nurses with us to ensure these babies would be well taken care of post-operatively and we were leaving the country on Wednesday morning. Please know we do not take these decisions lightly. We considered all kinds of options. Do we cancel the adults to take care of the babies? But that would be breaking a promise to the adults. Do we try to take care of the babies knowing the great risk involved? One of the considerations is how long do we think they will live. Would we be potentially hastening their deaths? And do we think we can get them to the U.S. soon for repair? Are there hospitals that will accept them?
We ended up taking one of the babies to the catheterization laboratory on Tuesday. She was the smallest baby we’ve ever taken care of in Mongolia, another historical moment. From our U.S. standards, it did not go smoothly given all the glitches in the system and the fact that we were charting new territory. But we left a living, breathing, smiling, cooing infant in her parents’ arms when we left…and we think we did her some good. She will need more procedures. We hope and pray we will see her again in Mongolia when we return in September and we’ll complete her repair.
We left two other sets of parents heartbroken. We pray we can get them to the U.S. for repair. The clock is ticking. Samaritan’s Purse Children’s Heart Project will get them to the U.S. or Canada, if we can get a hospital to accept them. The economic downturn is affecting hospitals as well and limiting the amount of money available for charity care. The complexity of these cases also limits the hospitals that will accept them. There is a chance we can negotiate with a hospital in San Antonio to take them for a flat fee.
So, as always, pray. Pray for the healing of the five patients we took care of (the last two patients I didn’t explain were a 16-year-old who had a diagnostic cath and needs to come to the U.S. for repair and another teenager who has already come to the U.S. for repair who had a diagnostic cath to confirm all is well). Pray for the continued care of pediatric heart patients in Mongolia, for the ones that they are able to take care of and, most of all, for the ones that they are unable to take care off. Pray in specific that we’d find a way to get these two we met taken care of. And pray for the many more that we haven’t met there and all over the world.
In church on Sunday, they sang in Mongolian one of my favorite worship songs: “Blessed Be Your Name.” I love this song and always pray that it would be true for me: “Every blessing You pour out I’ll turn back to praise. When the darkness closes in, Lord, still I will say ‘blessed be your name’.” When I sat in that room, sad for those babies and their parents, the only thing I could rest in is that the Lord is good and He is sovereign. “The Lord giveth and the Lord taketh away. Blessed be the name of the Lord.” Job 1:21b
We have witnessed so many victories in Mongolia and for that we rejoice. We are so blessed to be a part of this work the Lord has called us to do. We always feel we get more than we give on every single trip. The gratitude of the patients and their families is humbling. We pray they see in us the love of Jesus, the reason we do what we do. To Him be the glory, great things He has done…and will continue to do!