Guest Posting: Mending and Searching for the Broken Hearts 2007

This was written by one of the nurses who joined us for both the surgical and screening weeks this year. I (Kim) asked her permission to post it on our website because I thought it was such a beautiful and honest account.

Several of you have expressed interest in hearing about my trip. I’m sorry if I’ve been vague or non-descript in my stories…it’s just there is so much to process…It was like entering into another world. Now that it’s been a few days since returning home I’ve had a little more time to reflect on the last few weeks.

The words of the U2 song, Crumbs from your Table, crept into my head and played over and over as I watched a 13 year old boy hobble from the echo station (a machine used to see the inside of the heart) and out the door. “You speak of signs and wonders, But I need something other, I would believe if I was able, But I’m waiting on the crumbs from your table, Where you live should not decide Whether you live or whether you die.”

As he leaves someone grabs his hands and snaps a picture of his purple nail beds, which were rounded by some of the worst clubbing (due to lack of chronic lack of oxygen to the tissues) I’ve ever witnessed. He pauses briefly by the door to catch his breath and give a faint smile to the girl on our team who stopped him to give him a toy. His elderly grandmother places her hands under his armpits to support his weight as he steps out of the building and into the swarm of Mongolian children and their weary parents waiting outside.

My heart breaks. I just learned he probably won’t make it through another month; his lungs are so bad from his heart defect he can’t lie down without feeling as if he’s drowning in his own fluids. And yet, he managed to smile at me when I listened to his heart and his face lit up when I gave him a spider man wallet and NYC postcard. His eyes told of sadness but not bitterness. Do you think he knows that if he was born somewhere else he might be helping his grandmother out the door? He might be playing soccer outside with the other kids? “Where you live should not decide whether you live or whether you die”.

Two nights prior I stepped into the “pediatric intensive care unit” at the Women and Children’s’ Hospital in Ulaanbaatar. I’d only been there for an hour when a distraught couple came running into the unit carrying their 11 year old son. The boy’s eyes were rolled back into his head and blood poured from his mouth. We quickly cleared a bed and lay him down. Upon hooking him up to the monitors we saw that his heart had stopped. Immediately we started resuscitating him.

Things ran quite smoothly considering our resources. However despite sucessfully retrieveing a heart beat and blood pressure his pupils were dilated and fixed and his blood gas revealed that he was beyond a point in which we could do anymore for him medically. I watched as his heart stopped beating yet again. His parents who remained in the room as we worked, ran to the bed and his mother threw her body over his, weeping. His father stood back a few steps, attempting to maintain a controlled expression despite the tears that flooded his eyes. I stared on blinking back tears, as the nurses wrapped his body in preparation for the morgue with an efficiency and speed as if they’d done it several times before…

He was in end stage kidney failure. A condition that in the states we normally treat with dialysis. Many kids can live for a long time with regular dialysis treatments until they receive a kidney transplant. In America kindney transplant’s are performed routinely and with high success rates. Most of the time children go on to live a normal life after their transplant. Yet Mongolia doesn’t have dialysis and consequently he had no chance of survival. “Where you live should not decide whether you live or whether you die”.

I walked out of the hospital that morning, through the maze of concrete walls, paint peeling or simply omitted, hopping over the gaps in the flooring, feeling overwhelmed. I didn’t know how to process this.

Flashing back to the first week in Ullaanbatar, it was hard not to feel like celebrities. As we arrived at the hospital we were greeted by lines of anxious Mongolian families either anticipating a scheduled heart surgery or hoping they might get lucky enough to be seen by an American doctor. We had 3 cardiologists, a surgeon, two anesthesiologists, a perfusionist, 10 ICU nurses, 2 child life specialists, 2 bio mechanical engineers and 3 ICU intensivists all from the best hospitals in the U.S. The Mongolians smiled and waved as shuffled through the crowd awaiting us. Kim, one of our anesthesiologists looked at me as I commented on the situation saying, “It’s almost scary having so many resources because it gives you a false sense that we are in control…sometimes it makes it harder to depend on God when you seem to have so much”. Little did I realize at the time, I was going to learn such a life-changing lesson in humility through our “fame”.

We operated on a little boy named Tsend…he was very sick from the start. Because of his heart defect his coloring had a bluish hue from the lack of oxygen in his tissues and he only had enough energy to sit on his mother’s lap and weakly watch the other kids his age playing around him. After the heart surgery we performed he came back to our unit critically ill. He was requiring multiple medications to sustain his blood pressure and heart rate and a breathing machine to keep his oxygen at a level compatible with life. His prognosis didn’t look good. Tsend would have been a really sick unstable patient in the states and with our limited resources in Mongolia his condition was even more tentative.

That night I left the hospital with an uneasy feeling in my stomach. I wasn’t sure that Tsend would be there the next morning when I returned. Yet the following day he was still fighting. We continued with our planned surgeries. Our next patient to be operated on was beautiful little Bogi. Bogi’s very presence lit up the room. From her over sized pink ribbons to her sparkling black eyes, Bogi was quinescentially childhood innocence and joy. She’d reserve the brightest smile for every one of us no matter the circumstances. As Bogi awoke from her sedation after her cardiac catherazation she gave the doctor and nurses two thumbs up and a weak little smile. We all fell in love with Bogi…it was hard not to. Her parents loved her very much too. Bogi’s daddy walked three days from in the desert to make to the hospital in time to see her before her heart surgery. Bogi’s mom was a woman of faith I can’t begin to comprehend.

Bogi died just hours after her heart surgery. Her surgery was a “routine” one. It was one of the simpler surgies scheduled for the day. We’d expected her to recover from it in a day…and yet she died. I felt like the world stopped. I didn’t understand…how, why? Why Bogi of all the children? Why any of these beautiful children? “Why the pain before the child is born?” – Bono

I could hardly lift my fork at dinner that night…how was I going to muster any reserve to go back the next day and do it all over again. Bogi died…and little Tsend was probably on his way out as well. I tossed and turned all night. I woke up several times to pray…praying for a miracle. I’d made a choice to trust and follow Jesus…I didn’t understand what God was doing but I’d made a decision to trust Him…that night I had to hold onto that decision even though my heart was begging me to let go. I prayed for a miracle for little Tsend over and over that sleepless night.

The following morning…I could hardly compose myself as I walked to little Tsend’s bed and saw that he’d decompensated even further over the last 10 hours. God…were you not listening to me last night? I don’t get you. I watched, demoralized, as Kirk and our other doctors prayed over little Tsend’s bedside for wisdom. The offered him up to Jesus and waited. It was then they decided to take him back to the operating room and try to re-do his surgery. Thank Jesus that is exactly what he needed. Without the aide of the equipment and tests we could normally run in the states the operating room was our best option. The days to follow Tsend’s condition improved.

I had the opportunity to stay when the rest of our surgical team returned to the states, to take care of baby Tsend. I was able to see his breathing tube come out and let his mommy breast feed him again. It was a miracle…and it wasn’t because of our fancy American team, our years of experience at top hospitals or our shiny equipment. It was because God is sovereign and He is in control. Little Tsend taught me that there is hope in hopelessness.

I’ve been back in the states for about three weeks now. The transition is tough to say the least. It’s hard to have “normal” conversations about Brittany Spears and the Red Sox anymore. I find myself withdrawing a bit and tearing up at random times as flashes of memories from my trip ruminate in my mind. We are so blessed and so rich monetarily in America. The value of human life stretches beyond class, color, creed and country and yet it still holds true that, where you live DOES decide whether you live or whether you die. My prayer is that someday it will not.

Thanks for listening.

Genevieve

Mending the Broken Hearts Mongolia 2007

               As often is my practice, I (Kim) am en route home from another mission trip as I write this.  It’s always a good time to process what I’ve experienced in the preceding days.  I just spent a week in Ulaan Baatar, Mongolia for our third annual Mending the Broken Hearts week, a project led by For Hearts and Souls and Samaritan’s Purse’s World Medical Mission.  There were 30 of us on the team, including a CT surgeon, 2 pediatric cardiologists, 3 intensive care doctors, 3 anesthesiologists, a perfusionist, 9 ICU nurses, an OR nurse, a scrub tech, a nurse practitioner, a pharmacist, 2 biomedical technicians, 2 child life specialists, 2 extraordinary helpers, and the Director of World Medical Mission, who served as our chaplain.  The team did at least 10 cardiac catheterizations, including 2 atrial septal defect (ASD-“hole in the heart” at the collecting chamber level) device closures and we performed 8 surgeries on a total of 6 kids.  These numbers are significantly less than we had planned.  We had the biggest team we had ever taken, the most supplies, and the most medicines.  With these “dream conditions,” we had hoped to do 15 caths and 15 surgeries.  The theme of the whole week was the Lord’s ways are not our ways and His plans are not our plans.  We had a number of “firsts” that I would rather not ever experience again.

               The week started with our surgeon and two of our intensivists being stuck in Beijing en route.  They were supposed to arrive Sunday a.m. but did not arrive until Monday afternoon.  We were able to begin cases in the cath lab as planned on Monday a.m., but did not start our first operating room (OR) case until after 3 p.m. on Monday after these people arrived at the hospital directly from the airport.  This first case was a promise kept.  Kirk had found the child’s mother last year on the Searching week.  The mother has an inoperable heart condition.  After receiving this bad news, she asked if Kirk would check her daughter.  Kirk’s heart sank when he learned her daughter had an atrial septal defect and would need heart surgery.  He promised the mother we would perform this surgery when we returned this year.  I’m happy to report Anujin did very, very well.

               Tuesday we started the OR day with approximately 1 ½ year old Tsend, a boy.  He has Tetrology of Fallot and was very, very blue due to very little blood flow to his lungs.  He was at great risk of sudden death and was not a candidate to go to the U.S. for repair due to the extremity of his condition.  I don’t know how to explain it other than to say he “tried to die” many times during that operation in which the surgeon placed what’s called a central shunt to allow blood flow to the lungs from the aorta.  Staci (the anesthesiology resident that was my invaluable right hand woman all week) and I were extremely relieved to deliver him alive and stable to the ICU.  However, he “tried to die” many times over the next 48 hours.  The ICU team worked so very hard around the clock to keep him alive, including hand ventilating him over many, many hours as the ventilator kept ceasing to work.  The second case was a teenage boy with a ventricular septal defect (VSD-“hole in the heart” at the pumping chamber level).  Most children with VSDs are inoperable if they are not repaired by age 2 due to too much blood flow to the lungs which irreversibly damages the lung blood vessels.  His type of VSD allowed his lungs to be protected and for him also to do well with this surgery.  We had a big scare when we were trying to take him off the cardiac bypass pump though.  A normal part of the separation from bypass is to get the heart, which has been stopped, to start beating again.  Often the heart goes into ventricular fibrillation during this time and we electrically “shock” it out of this rhythm.  His heart went into ventricular fibrillation (a lethal rhythm when not on bypass) and we could not get the defibrillator to work for a good ten minutes.  We were giving medicines to try to help, but finally the Lord answered the fervent prayers of a lot of stressed out people in the operating room and the defibrillator worked.  He is now doing very well.

               On Wednesday, our first OR case was Bogi.  Bogi was 7 years old and looked like she was 3 or 4, in terms of weight.  The team fell in love with her when they met her at church on Sunday.  Bogi had an inoperable VSD due to the irreversible pulmonary hypertension described above.  She had actually been to the U.S. in hopes of having a repair 2 years prior and had been turned down.  Her mother became a Christian on that trip and was an active member of the church started by our missionary friends in Ulaan Baatar, Rita and Margie.  Bogi was taken to the cath lab for a diagnostic cath on Monday to assess how bad her pulmonary blood pressure was.  She got an unexplained heparin overdose and bled A LOT at the end of the cath lab case, a scary first that she survived.  The heparin had been mixed by the Mongolian team, so we had our pharmacist mix the heparin for the rest of the week.  We had a second heparin overdose on the second day despite this precaution.  We found ourselves repeating over and over throughout the week “it is Mongolia.”  We do a lot with their equipment, medicine, and supplies…and sometimes it goes far from smoothly! 

Anyway, back to Bogi’s condition, Kirk has lost count of the number of children and families in Mongolia he has cried with as he has had to break the news about inoperable VSDs.  I’m sure the number is well into the hundreds, or even the thousands, over his eleven trips there in six years.  This is something we just don’t see in the U.S. because our kids get repaired in a timely fashion.  This is a problem our team has made a concerted effort to do something about.  That is why Kirk leads a Searching week every year to try to find these kids before it is too late and to educate the Mongolians in different parts of the country about getting their kids seen early.  We have also been trying to teach the Mongolian doctors to place what is called a pulmonary artery (PA) band on these kids before they are 2.  This is a simpler surgery than a full repair and it doesn’t require cardiac bypass.  The mortality rate for the more complicated repair in Mongolia is easily 50 percent.  If the kids get a PA band, their lungs will likely be protected and they have more time to get to the U.S. for a full repair.  In fact, our first case 2 years ago was an approximately nine-year-old girl that an Australian team had put a PA band on seven years prior.  This allowed her to remain operable and we were able to remove her PA band and close her VSD…and likely save her life.  Bogi would be considered inoperable in the U.S.  I’m trying not to get too complex with the medical explanations, but despite her high pulmonary blood pressure, she still had what we call “reactive” pulmonary vasculature.  Our team has been trying to put PA bands on some of these kids in the hopes that their lungs will heal and they will become operable.  This, admittedly, is a last ditch effort that we don’t know will work.  It’s not something we’re familiar with doing in the U.S. simply because we’re blessed enough not to have to.  If it works, we have the chase to save countless kids.  Bogi’s parents had known for 2 years that she was inoperable.  They were well counseled that we didn’t know if this would help her, but it offered them a measure of hope and they were willing to proceed.

Bogi’s procedure went quite well.  It was actually quite straight forward and I even said so in the OR to the Mongolian anesthesiologist I was training.  I’ve learned nothing is straight forward in Mongolia and to take nothing for granted.  We took her breathing tube out in the OR.  She went to the ICU and was awake and interacting.  She was probably there for at least 2 hours when she medically decompensated quite suddenly.  You can imagine we’ve debriefed this and debriefed this.  The ICU team did everything rapidly and right.  We got her back into the OR as fast as we could.  Staci and I actually had another child asleep on the table with all her invasive lines in ready for her surgery, which had not begun.  In the U.S., you’d just go to another OR with an emergency case like this.  Problem was, there was no duplicate equipment in the other OR.  We put the child on the table on a portable monitor, placed her on a gurney, and Staci kept her stable in the hallway while we rolled Bogi into the still sterile OR.  Our surgeon got her chest opened and we performed a heroic, valiant “code” for a very, very long time and were never able to get her back.  Despite an autopsy, none of us can explain what happened.  In the OR, Kirk finally made the difficult decision that nobody wanted to make to cease our efforts.  That OR was full of praying people who had fallen in love with that little girl.  Kirk prayed a beautiful prayer committing her to Christ, which was translated into Mongolian.  There was not a dry eye in the room, Mongolians included.  That actually is very significant given they see death A LOT and those that work in the medical field are often quite stoic to it.    

Bogi’s parents’ reaction was indescribably miraculous.  Of course they were appropriately heart-broken and sobbing.  But Bogi’s mom, shortly after hearing the news, raised her hands to heaven and started saying “I praise you Jesus and thank you for every minute I had with my daughter.”  Her father told Kirk that he knew we did everything possible and how thankful he was that we had offered hope in a hopeless situation.  They came back the following day and gave everyone on the team a sheet of bookmarks on the back of which Bogi’s mom had hand-written for all of us the following 2 verses which she said God had given her to give to us:  “I thank my God always on your behalf, for the grace of God which is given you by Jesus Christ (1 Cor 1:4)“ and “Therefore, my beloved brethren, be ye stedfast, unmoveable, always abounding in the work of the Lord, forasmuch as ye know that your labour is not in vain in the Lord (1 Cor 15:58)“.  You can imagine how tremendously these verses ministered to and encouraged us.

We decided to cancel the case of the child who had been whisked out of the operating room.  I actually think that was one of Bogi’s many gifts of the week.  The child had had a “cold.”  In the U.S., I would have cancelled her surgery.  That’s a harder decision in Mongolia when you’re only there for a week and not doing a surgery might mean the child dies.  But she had pulmonary complications immediately after putting her to sleep and I think it was divine intervention that we did not proceed with a case that would have resulted in potentially another very sick child.

The surgical team arrived Thursday morning to a very tired ICU team and a very, very sick Tsend (the first case from Tuesday).  We decided to take him back to the operating room.  Lots of prayer required there.  We were going to put him on bypass to fix his shunt again, already a difficult proposition if you’re not starting with a very sick child.  We all knew there was a high likelihood this child could die in the OR too.  His case was an exhausting, hard fought battle.  When we were trying to get him off bypass, his lungs would literally not move—another “first” I’ve witnessed.  I suctioned them out I don’t know how many times, replaced his breathing tube twice, and used asthma medication over the course of an hour.  We came off bypass, because we had to eventually, with lungs that would barely move.  By the grace of God, his lung function got better and better over the next 2 hours.  Then he got better and better over the next 2 days, all in answer to a lot of fervent praying.  Another “first”:  we’ve never had a child still on the ventilator on Saturday of the surgical week.  We always try to do the difficult cases early in the week so we can have everyone out of the ICU by the end of the week.  So, for the first time ever we transported a child across town from the adult hospital where we do the surgeries to the children’s hospital.  Our 3 intensivists were leaving on Saturday, but, by God’s grace and planning, another intensivist arrived on Thursday for the Searching week.  Two of the ICU nurses were planning on staying for the Searching week and two more agreed to lengthen their trip.  I just learned from Kirk that through the Lord’s miraculous intervention his breathing tube has been removed!  It brings tears to my eyes to consider what a miracle this is!!  Our second case on Thursday was a 9-year-old ASD who, thankfully, did very, very well.

On Friday, we were supposed to do another PA band case and an ASD.  Given what happened with Bogi, I think we were all nervous to do another PA band, but, praise the Lord, it went very well.  The interventional cardiologist on our team had tried to close a patent ductus arteriosus (a vessel necessary for fetal circulation that should have closed after birth but didn’t) with a device in the cath lab, but the device size was inappropriate for this defect.  So, again not in keeping with our plans, we had to take her to the OR and close this defect operably.  She also did well.  It was then late in the day, too late to do another cardiac bypass case that would have to remain in the ICU when most of the team was leaving, so we had to cancel this case.  This patient will have a normal life span if we fix her defect by age 20, so we promised her, Lord willing, we would do her case next year.  This, however, was incredibly and understandably emotionally hard on her, her family, and those who had to break the news to her.

 So, 15 caths planned.  Only 10 done, and at least 2 with complications.  15 surgical cases planned.  Only 8 performed on actually 6 patients, with 2 “bring backs” and 1 death.  I only told you the stories and difficulties I know from being directly involved in them.  There are 29 other people who could offer you their stories and perspectives.  All of us would tell you it was one hard week, easily the hardest of the three surgical weeks we’ve had.  Not a great report.  Pretty discouraging.  So, what’s the lesson?  We’ve all processed that a lot.  Kirk and I spent what little time we had alone together processing it.  Is the lesson that we should quit?  I wondered that last year when Undurmaa died.  I wondered it again this year when Bogi died.  I don’t think that’s the lesson.  Neither does the team.  I in no way want to sound callous when I say this, but as Kirk has pointed out, pediatric heart surgery has been built on the deaths of many children.  Every new procedure, every new advance has come at a cost.  The pediatric cardiac surgery mortality rate in Mongolia is easily 50 percent.  In the U.S., it’s less than 1 percent.  We are slowly, agonizingly making progress in our training of the Mongolians.  We are offering hope to families that otherwise have none.  When you see the magnitude of the need in Mongolia and the number of families begging us to take of their children and sobbing when we can’t, you don’t want to quit.  I’ve marveled the last 2 years that, despite what we’ve been through, the team members keep talking about “next year.” 

One night I was unable to sleep, processing it all.  Two years ago, our container of supplies did not arrive.  We had a much smaller team.  We did 8 surgeries with only the supplies the Mongolians had to offer and what we brought in our suitcases…and all the children did well, with few, if any, complications.  I was expecting this year to be so much easier because we had a dream team and incomparably more medicines and supplies.  I couldn’t figure out how we pulled it off before.  Then I realized…we didn’t.  The Lord did.  Even last year, despite the conflicting fact that we had a devastating death, was “easier.”  The Lord gave us an incredible covering of grace.  Truly, it is utterly amazing that we accomplish what we do over there.  I think this year He drew back the curtain a little and showed us how much He had been covering us…and, in the process, continued to cover us.  All the “firsts” and complications made all the good outcomes that much more miraculous.  And, never ever wanting to minimize Bogi’s death, I can already see how the Lord is using it for good and to His glory.  I love the song by Tree 63 which goes “Every blessing you pour out, I’ll turn back to praise.  When the darkness closes in, Lord, still I will say, ‘Blessed be the name of the Lord.’”  I will never forget our entire team, on the morning after Bogi’s death, standing in the ICU and beautifully singing the song “Sing Hallelujah to the Lord.”  The darkness closed in and we were still able to say, with Bogi’s mom leading us with her example, “blessed be the name of the Lord.”  So, we will “not grow weary of doing good” (2 Thess 3:13) and, Lord willing, we’ll be back next year.

The week after the surgical week, Kirk led a team of thirty Americans and sixteen Mongolians to the south Gobi desert for the Searching for the Broken Hearts week.  They screened over a thousand children and found sixty-three with heart disease (6 were inoperable, 19 were added to the waiting list for the Children’s Heart Project, 8 will be taken care of in Mongolia by a visiting team from Japan, and the rest did not need surgery).  A group from Okinawa raised over $13,000 to buy 1,100 Bibles that were given out during the week.  Most importantly, close to 300 people came to Christ.  He is good!