The 10 Children Who Had Their Hearts Fixed with Love, Kindness, and Expertise...

Tuesday 9/29
Mary Mamande
Peter Kabuye

Wednesday 9/30
Hellen Babiyre
Regan Tawoda

Thursday 10/1
Joachim Dingiro
Joan Owemigisha

Friday 10/2
Grace Apio
Jesse Wambi

Saturday 10/3
Hussein Babu

Monday 10/5
Ruth Kyomukam

Reflections from a first-timer

I cannot summarize all that I have taken in during our stay in Uganda but I will try to convey a few impressions. One overall reality is that people here are living and making do without many things that we take for granted. But there does not seem to be a shortage of hope or effort.

One of the things I noticed on the drive from Entebbe to Kampala that first day was that the roads were busy with people walking, riding or driving. And though they emerged from modest or poor neighborhoods with unpaved roads, almost everyone dressed well. And though the shop fronts and roadside businesses ranged from shabby to modest, they were bustling. Both in and out of the hospital people were using the available resources to get the job done, without complaint.

Arriving in Mulago what most impressed me that first day and every day after was the warmth, openness and humor of our colleagues and hosts.

With our Ugandan colleagues there was also an exchange going on that first day. I needed to learn how to work in a new setting, with new people and equipment that was not completely familiar. I also needed to learn which of the ideas and practices I brought with me were useful and applicable. Similarly, the Ugandans needed to get to know those of us who were there for the first time and what we had to offer. Anytime a new team is brought together there is a sizing up of strengths, weaknesses and personalities. So the first couple of days were a bit awkward for me. By day three things were noticeably easier as we began to coordinate better, draw on each other’s strengths and to appreciate each person’s contribution.

At the Samaritan’s Purse dinner I finally got the chance to talk to my Ugandan co-workers in a purely social setting. This was a treat. We talked about sports, politics, families and travel. We talked about life in Uganda and life in the US. It’s strange, but I never felt or was made to feel especially like a foreigner. The shared language helped tremendously but I think the main reason this was so was not language but the welcome we received and the mission we shared. There is nothing that pulls people together like having a common, important purpose.

This brings me to my last impression, formed while caring for the children and their families. Watching them progress from the pre-operative period of anxiety and waiting, through post-operative disorientation and pain, and finally back to a state of well-being and happiness was remarkable. I have been down this path many times before but to witness it play out in Uganda was unique.

The experience is the same for these children and families in many ways as for patients and families at home but it is also different. They are placing their faith in strangers from far away and we are trying to reach across that distance and demonstrate skill and compassion. To see the children begin to relax and open up, to see their intense and very individual personalities emerge, was a joy and a confirmation of success I will always treasure.

I owe many people thanks for this journey: my family for their love and support; Katherine Desrochers and Karla Brown for inviting me to join them and for their guidance; and Dr. Keith Kocis, the driving force behind this mission from its inception. This mission is a tribute not only to Dr. Amal Murarka but also to Keith. My special thanks to our Ugandan colleagues. I miss them the most.

Lastly, I thank the organizations who have shared our vision and made it possible to realize. Samaritan’s Purse and HVO have supported us in so many ways and their representatives in Uganda were wonderful to work with and know. May we continue to build on the successful missions behind us.

John Bryson, RN

Mission accomplished, #4

I would never have imagined how much we could accomplish in just a few years. On our first trip to Mulago in 2005 there was no PICU and no cardiac ICU to speak of. This year there is a fully functioning cardiac ICU with staff that have exceeded in everything we have asked of them. The PICU was full when I went to visit, and although their staffing ratios are much more dire, with acute shortages, there were children there that were to thrive because of the more intense monitoring available.

This trip was characterized by our toddlers, Joan, Hellen, Joachim, Babu, Jesse, Reagan and Anna Grace. The largest volume of two and under, I think I have ever taken care of in one sitting. This appeared to have a whole new set of challenges for our team, not least how were we to keep them all in bed, (we had no cribs available). Their bravery and stoicism was every measure of their teenage counterparts, Peter, Ruth and Mary. To see the little ones sitting up in bed, playing, and walking with chest tubes , wires and a sternotomy dressing, made me realise how pampered we all are.

Rounds had the added entertainment of these little ones, always watchful and serious, (our night shift nurses Susan and Jeannie were the only ones to consistently get smiles.) But their antics were a delight to watch. Hellen who could see us rounding on Joan, the team gathered around her bed. Joan was sitting quiet and regal in her stunning knitted pink hat, looking for all the world like the Queen at a gala. Hellen was watching everything very intently. I then noticed that Hellen had taken a washcloth, from the end of her bed, and was doing a wonderful job of fashioning it into a hat for herself, first trying to put it on her head and tie it around the back, then realizing that it wasn't quite big enough, she placed it squarely on top of her head, and sat just as proud and regal. While we rounded on Anna Grace she took her beanie baby that had been given to her and a towel, wrapped her baby and rocked it in her arms, looking down at the baby as a doting mother, so very precious. Joan was by far the most talkative and even after some analgesia and sedation, she was giving Karla down in the country as she had her tubes and wires removed. Goodness only knows what she said all I could catch was "muzinga" ("white person") but the Ugandan nurses were highly amused. They recovered nicely as you can see by the pictures of our toddler troop, where Joan is still to be seen in her wonderful pink hat.

On our last trip to Mulago, I had spoken in the blog about Matron Jolly. She is the head nurse in the pediatric acute care and PICU. On a trip to Bangladesh last year where she was at a conference on malnutrition, she fell and broke her hip. She was walking on crutches when we were visiting in 2008 and in a lot of pain. She has since had her hip replacement surgery, performed at Mulago. She suffered a post operative complication of foot drop and is now undergoing physical therapy. I went to visit her at home and she was in excellent form. She can walk short distances, is pain free and hopes to be back at work in the New Year. She wanted me to thank everyone for their generous donations and was very grateful for all the prayers and good wishes.

I cannot express with any justice how proud I am of the Ugandan nurses. In the three years we have been to Mulago and taken care of the post-op cardiac children they have become confident and autonomous. Setting up bedspaces to receive a post-op, noticing EKG changes, giving medicines and understanding their uses. Even the nurses that were new to this "camp" such as Lillian and Edith performed exceptionally well and presented in rounds better than some Residents, having the confidence to ask questions and challenge the modes of treatment that were to be followed. I am so looking forward to seeing them again next year, to know how much further they are in their practice.

There is always a great deal of sadness when I return from Uganda, my jet-lagged body may be here in Chapel Hill, but my heart stays in Kampala for a long time before it is ready to be back.

Katherine Desrochers, RN

A long and winding road

The long and winding road
That leads to your door
Will never disappear
I've seen that road before
It always leads me here
Lead me to your door

And that is how it feels to me. This time we had a winding road that started much earlier and continued even up until we left, but we still made it to the door of Uganda and the Ugandan Heart Institute nonetheless. We saw our supplies being carried on to our flight from Amsterdam to Entebbe which made their final arrival on Monday afternoon for unpacking.

Over the next several days, ten children were able to have their congenital heart defects repaired. They all recuperated beautifully and with their own personalities shining through on the ward. Mary, who was one of the first to undergo surgery, is a stunningly, beautiful teenager who was very quiet. Peter, another teenager, who was very stoic, perked up when he was given a baseball cap to wear! The two of them loved to have competitions, however, when spurred on by our nurse John. And we discovered that Peter had such great artistic abilities ---a fantastic drawer---one to keep our eye out for in the future.

The younger ones, Regan, Joan, Hellen, Babu, Jesse, Joachim, and Grace all had their own way to tell you what they were feeling even if you didn't understand their words. You still knew what they were trying to tell you. And finally Ruth, who was the last one to have surgery on Monday, and the one we didn't get to know as well. She still was apprehensive of the entire goings on, but aware that her heart was fixed and she was on the mend.

On to the nursing staff, who each time have brought us many laughs, challenges, and learning experiences in return. This year was no different. New and old staff were set to go with their schedule just as busy as ever. They have shown great progress each time. This year they had such great organization in their approach from setting up the bedsides, deciding on who would receive the patient, getting report, giving sign out to each other, and keeping up with changes with the children. An added twist to their repertoire from Dr. Dorostkar, was to give report on the children "resident style". They did this beautifully and without hesitation.

It was impressive to see along with the questions that arose from these interactions. It has been like watching flowers blooming from seedlings....slowly but surely and with such grace, beauty, and wonderment. And to the rest of the Ugandan team including the surgeons, OR nurses, anesthesiologists, perfusionists, and physical therapists, your efforts have not gone unnoticed. If there is one thing that we have seen in Uganda, is that there is a group effort in many settings, this one not withstanding.

I can't thank all of the UNC staff enough for all of their hard work over the last two weeks. We couldn't have done it without you. And to Stacey Peterson-Carmichael, Jeannie Koo, Parvin Dorostkar, and Gene Freid who took time away from their different hospitals and lives to work with us. You were wonderful to work with these past two weeks.

And so the long and winding road lead us to this door. This door that we hope will be open for many years to come as this program grows. The door that leads us to help the Ugandan Heart Institute and its team to repair and care for more complex heart defects. A long and winding road, the one that I have been fortunate enough to have been on twice before and continues to lead me right back to a country full of gracious, welcoming people. And if I remember correctly, the lyrics to this song written by McCartney have been described by him as coming from his inspiration of his home in Scotland. It has been an honor to come to Uganda. A home full of inspiration, away from my original home.

Karla Brown, PNP
CT Surgery

Sharing education at Mulago Hospital

The team is back in the United States, home from another full mission of interdisciplinary exchange at the Mulago Hospital of Makerere University in Kampala. We taught, directed practice, and learned much about delivering health care in Uganda.

With input from the nursing staff of Mulago we were able to direct our teaching and training efforts to areas of post op care that they felt most in need of. This included reviewing the pathophysiology of congenital heart defects and the indications for and uses of cardiac medications, calculating and preparing cardiac medications and infusions, discussing a variety of cardiac case scenarios, interpreting chest xrays and ECG wave forms, treating post operative pain and discussing cultural differences in providing pain control, and demonstrating physical assessment and discussing and treating the findings.

All of this teaching was done while the nurses provided excellent bedside care to the ten patients and their families. All teaching was done at the bedside during both day and night shifts. The Mulago and UNCH nursing teams were enthralled by the teaching and learning and could have spent many more hours discussing the nursing care involved in treating children following open heart surgery.

Over the ten days, we reconnected and strengthened our bonds with the staff nurses. These nurses were so very keen about practicing and refining the nursing skills they had learned during the past 'pediatric cardiac surgery camps' that it was both a privilege and a pleasure to be with them as they worked to perfect their nursing care. It was quite obvious from their practice and their questions that they have incorporated much of what has been presented to them in the 'camps' UNCH and other groups have provided. I look forward to continued collaboration with the Mulago nursing staff developing and implementing further educational resources.

-- Diane Yorke, PhD, RN, Clinical Education Coordinator for the UNC Project-Uganda

The pediatric cardiac surgical mission concludes

We left UNC 12 days ago to travel to Uganda to train Ugandan health care providers to perform one of the most complex and difficult surgical therapies: open heart cardiac surgery. Building on the work and success of the last two years, Team UNC quickly reestablished, restocked, and reorganized the operating room, cardiac bypass perfusion, and ICU into a fully functional state. During the first four days, two operations were performed each day by Dr. Michael Mill, with the final two cases concluding on Saturday and Monday. The results are that ten Ugandan children from ages 2 to 14 have had their severe cardiac disability corrected, for a lifetime. These children leave the hospital with a scar on their chest as a sign of the work that was done, but free from disability, heart failure, and multiple daily cardiac medications. Their spirit, energy, and appetites have already markedly improved.

We continue to advanced the abilities of Team Uganda towards independence and skill in increasingly more complex surgeries. The goal is long-term sustainability of the pediatric congenital heart surgery program so they can successfully and expertly correct the wide variety of cardiac defects found in the children of this country.

We depart from Kampala today leaving behind unforgettable memories of new and old friends and colleagues. Most importantly, though we sent home from the Mulago Hospital ten children who now look at their lives with hope, excitement, and new-found energy to face the rigors of childhood, school, and life in this developing country.

My experience as a newbie

Coming to Uganda, I had no expectations about what our mission would entail. It has been an amazing trip to date, with a busy ICU, lots of teaching (and learning) in the most welcoming environment I have ever encountered. To interact with the patients and their families both preoperatively and post-op has allowed us to bond and not be strangers. It has warmed my heart to see our patients now out on the general ward, ready to go home and continue life with a new outlook. The teamwork between the UNC group and the Mulago healthcare team members has been enjoyable, productive, and fun. This is a resilient and resourceful group and I have learned a lot about Uganda, its people, and its healthcare system. Thank you to everyone from the UNC team who were gracious enough to invite me to participate, and thank you to everyone at the Mulago Hospital for welcoming me into their workplace.

-- Stacey Peterson-Carmichael, MD

Dr. Gene Freid's thoughts

This is a second year providing anesthesia care at Mulago Hospital and Uganda Heart Institute. This year has brought added complexity with smaller and younger children and more complex congenital heart lesions. All 10 children have had surgery and are recovering nicely. It has been rewarding to see the children recover and walk about the halls knowing that their heart is repaired and they have a chance for a normal childhood.

What strikes me about this mission is the outstanding teamwork amongst the UNC team members and the Uganda Heart Institute staff with a common goal to provide safe surgical and postoperative conditions. There have been numerous tribulations this year ranging from illness in both the US and Ugandan team members; several children with respiratory infections and 3 of the children with active malaria. The anesthesia delivery system failed in the middle of one of the cases requiring completion of the case without it and a late night anesthesia machine repair “party” to repair it as replacement parts were not available. Drs. Mijumbi and Ejoku, the Ugandan anesthesiologists have demonstrated excellent clinical skills and are close to functioning independently.

Through all of the adversity team members have tirelessly pitched in- nurses, Respiratory Care Practitioners, biomedical engineers, surgeons and ICU attendings alike - to assist the anesthesia team in providing safe intraoperative care of the children. Separate thanks need to go to Karla, Katherine, Jen and Rueben assuring that all needed supplies were on site and Dr. Kocis for his energy, enthusiasm and effectiveness in coordinating such a large scale project.

-- Gene Freid

The Toddler Troupe

This year we did the largest number of small children: 7 children under 10 kg. Without a mom sitting continuously by the bedside at post-op, the babies would act like babies and cry. The nurses had a whole slew of tricks to keep them pain-free and comfortable.

When the night comes. . .

The night team is often less recognized, not for the lack of impact or importance, but merely the fact that the sun has set, the moon has risen and quiet has come to the city....everywhere except the ICU. Jeannie Koo, Susan Van Fleet, Diane Yorke and the 3 PICU Docs (yep....that included Gene Freid) keep things going after a long day of activity in the OR and ICU.

Just breathe. . .

In Uganda, the role of the Respiratory Therapist (RT) remains elusive. Despite 3 previous missions, we have not been able to establish a firm partnership between our RT's and their personnel. We have tried physical therapists, nurses, anesthesiologists, etc. Our work remains undone. Fortunately, Lupe Haynes (on her 3rd mission) and Sheila White (a newbie) have taken the task head on. They have provided expert respiratory support to these children from the moment they return from the OR following cardiopulmonary bypass. Miraculously, all children have been spontaneously breathing within minutes of arriving in the ICU (save 1..who was ventilated for about 2 hours). They have been teaching different levels of healthcare providers about basic and advanced respiratory support. Our results would not be what they are without their endless efforts.

(By the way, my favorite song, "Breathe," is on Anna Nalick's album "Wreck of the Day")

The Blue Devil connection

We are so pleased to have Dr. Stacy Peterson Carmichael (former Tar Heel) and Jeannie Koo, RN, PNP, join us on this mission. Both have brought their knowledge and skills from the other end of Tobacco Road on the Road to Uganda. Stacy is staffing the PICU while Jeannie is working the "lobster shift" to keep the kids recovering.

But is the lobster shift in Uganda the day shift in Durham?

Samaritan's Purse leadership visits UNC Project-Uganda

Mr. Kenny Isaacs, VP for Projects at Samaritan's Purse, visited UNC Project-Uganda today. He was accompanied by Associate Director for Projects, Mr. Edward Bensham and Ugandan Country Director, Mr. Chris Blacham. We have worked very closely over the past three years with Ugandan's Doreka Shemsande, Children's Heart Program Project Manager and Samantha Nuwagaba, Children's Heart Program Coordinator (both pictured above). Ms. Cindy Bonsal, based in Boone NC, heads the Children's Heart Program. Her leadership and support has made this program possible.

Samaritan's Purse is a Christian humanitarian aid organization based in Boone, NC with an extremely successful Children's Heart Program. They have arranged for the correction of hundreds of children with heart disease by partnering with U.S. physicians and hospitals. This past spring, six Ugandan children were brought to the U.S. for repair of their defects as part of a larger program co- sponsored by the Gift of Life.

Patrick Kahuma (pictured above), was brought to UNC-Chapel Hill where he underwent a successful balloon valvuloplasty of his pulmonary stenosis and ASD closure with an Amplatzer device. These minimally invasive procedures were performed in the pediatric cardiac catheterization laboratory by Dr. Elman Franz with anesthesia by Dr. Peggy Dietrich.

We let Dr. Freid practice in BOTH the ICU and OR

Views from the PICU

Glad to be back!

Well it's Friday and all the surgeries have gone well. It's been a joy to watch these children transition from very sick children, to awaken to a better chance at living life to the fullest. There are smiles given that just make your heart melt. At times the communication lines are hindered because of language barriers but smiles and hugs say so much to them. I may not be able to speak their language but I can communicate and a better meaningful way. Even though this is my third trip here, I'm always taken back by their appreciation and gratefulness. Things that we define as a hard or difficult way of life for us, is mere richness to them. I'm reminded that I need to thank God for all that he has blessed me with. Whether if it's using my talents or skills to bless others, I dare not waste what has been given to me to help others in need. The staff here at Mulago Hospital are wonderful people who also are thankful for our help. They have grown so much in the past 3 years and are blossoming into confident health care givers. They can help their country and a way that is meaningful to them. For those that read this entry, make sure that giving to others becomes a way of life for you and just know that the return of doing so will bless your life as well.

Lupe Haynes Respiratory Therapist

Views from inside the OR

An update from the "pearl of Africa"

The broken anesthesia machine is now FIXED (at midnight). THANKS, Elizabeth!

Wonderfully six children have been healed. They are recovering and their families are glad. This has not been without challenge. Twenty-four hours a day the team is caring for the children. Twelve hours a day someone is fixing the equipment- and that would be me. The equipment at the Ugandan Heart Institute is quality equipment but has not been without problems. Some functions have needed to be enabled on the devices. Those are the easy problems. Some problems have been typical electronic problems like reseating cables and connectors. Others have been more serious and parts have been replaced by scavenging from defective machines. Yesterday a part was needed to repair a machine. I asked Melad the technician here to call the equipment's service representative here to request the part to be delivered overnight... as if. Unfortunately access to parts are not readily available and other options had to be explored and delivered. The equipment here is supporting great work and great people. My hope and prayer is that it continues.

The internet is back up (at least for now) so expect some posts

But we think we figured out what was wrong: somebody has been monkeying around with the cables!.

Gifts for the children

The team brought gifts for the children to have after their surgeries. Brightly colored bags are filled with pencils, notebooks, crayons, bubbles, kazoos, etc. The bubbles and kazoo are wonderful for improving their lung function. The favorite seems to be the Beanie Baby stuffed animals. The children are asking for them immediately after they wake up during the day and evening post op. They are most comforting.

My own children, Kyra and Connor, helped select books for the children as well. The older children received the High School Musical activity book. I was pleasantly surprised that they knew of the movie and one had even seen it. The smaller children have Sesame Street books, with the middle aged children choosing either Pirates of the Caribbean or The Chronicles of Narnia. The country has primary education for all.

(As an aside, we have learned on this trip that even Uganda has "universal" health coverage. . .)

Thursday update

Hello all, we are still with very limited (and slow) email access. Hopefully this will improve today. The team finished in the OR at 8:30 pm last night and we had a pizza party to relax. The infirm members of the team are getting better each day, hopefully to return back to work in the next 24-48 hrs. Sleep is improving, though still erratic. Luckily the Ugandan coffee is STRONG.

The four patients done so far are doing extremely well. Two will transfer to step down status today. Two more patients to OR today with the first case having just gone back. The teams are working well together. The knowledge transfer continues. We are expecting a VIP tomorrow

More later.