Checkpoint - Month 6: Butterfly Palliative Home

It’s impossible to describe my emotions as I type out these words: I am halfway through my Watson journey. So much has changed since I posted my first entry before I left home and started this ridiculous year around the world. There are the obvious things: fear turning to comfort, pride at my project coming alive, my worldview expanding, and my ideas about death and dying shifting and evolving. And there are the changes that have snuck up on me: comfort turning to true confidence, global families created, finding a home in parts of the world I never dreamed of traveling to nevertheless living in, immense joy in sitting with myself, falling ridiculously in love with a child only to realize I indeed could not adopt at 23 years old with no money and 6 months left in my travels. I’ll circle back to that.

But in complete seriousness, I am not yet ready to share all the ways I feel the Watson has changed me, my career path, or my life path more generally. I feel very possessive of these changes, like they are mine alone to hold onto for the remainder of my time traveling, perhaps because I am not fully capable of articulating them yet but also because I know the second half of my fellowship will have just as much (or even more) of an impact on what I take away from this year.

For now, what I will say about my sixth month of Watson travels is that it was, in so many ways, blindsiding. Having added my journey to South Africa, to Ingwavuma and Butterfly Home specifically, last minute, I came in with no expectations. I was ecstatic not only to get an inside peek into the clinical aspects of palliative and end-of-life care in Africa after spending so much time on cultural explorations in Ghana but to do so with a pediatric lens. I knew I would be volunteering at a palliative hospice for children with terminal conditions. But that’s essentially it – I was going in ready for anything. And yet I was still surprised at just how much South Africa had to teach me about our care system in America, at how much I had to learn about the capacity of palliative care to give someone their life back, at how I, who has always been interested in pediatrics but never felt extremely maternal, found myself with 12 children, one of whom I truly felt some ridiculous soul connection with that I suppose can only be described as a mother-daughter bond. I owe all of this experience to Dr. Julia Ambler at Umduduzi, whom I wrote about in my last post, and to Butterfly Palliative Home.

So it feels only right to depart from my typical monthly review and instead tell the stories of Butterfly Palliative Home and its children. I hope even a fraction of the love I feel for this place comes through and grabs you as well.

DISCLAIMERS: This post is LONG because the story of Butterfly and its children deserves all the detail. Jump around – take your time and read about each kid! Tarryn is the legal guardian of each of these children, so their stories and pictures are all legally shareable with her permission!

Butterfly Palliative Home’s Story

Tarryn Bell, and her husband Christoff, found themselves in rural Zululand after growing up and living in Cape Town because of Christoff’s community service year. This is a unique part of the South African path towards becoming an “attending” doctor – instead of what is known as an intern year in America, the first year after medical school, you serve in a local community for a year somewhere in South Africa. Christoff was placed in the small, rural community of Mseleni. As Christoff continued his path toward becoming a full-fledged doctor, Tarryn worked as a clinical social worker at the very same hospital where Christoff was serving. It was at this hospital that their lives would be forever changed. During her work, Tarryn took increasing notice of the children admitted. Many of the seriously ill children would live in the hospital for months, even years which is not atypical for the hospital system in South Africa. However, she was extremely disturbed at their lack of ability to be children – they lay in their cots for weeks and weeks, siloed to a corner of the hospital, checked on maybe once or twice a day. More so, many of these children, as Tarryn would discover, had been abandoned by their parents to the hospital system; for these specific children, Tarryn knew there was no way out.

This realization quickly became personal when Tarryn happened upon Ncami, a little girl around the age of two with pulmonary hypertension secondary to Down’s Syndrome, and hydrocephalus. Ncami had been in and out of the hospital system, otherwise living at a children’s home that was not entirely equipped to deal with her care needs. The issue is, that in South Africa, children with complex medical illnesses are deemed non-adoptable, so Ncami would never have been adopted from the children’s home and given better care. That is, of course, until she met the Bells who fell in love with her and decided they were called to be her parents. I use the word called because Tarryn and her husband are devoutly Christian and Tarryn felt so strongly that it was God’s will to adopt this child. And she brought this same fierceness in her fight for her new daughter’s care. Ncami desperately needed a transplant but all doctors refused, citing her other diagnoses as risks. Tarryn tried everything, she was the ultimate advocate for her daughter, and still nothing. After only 6 months as their daughter, Ncami died in Tarryn and Christoff’s arms due to heart failure. Completely devasted, Tarryn turned towards her faith and felt in her heart that this was not the first child she would love and lose.

After this life-altering event, Tarryn began a master’s in social work pertaining specifically to pediatric HIV but her outlook on pediatric care had changed forever. In her studies, she found that South Africa has one of the highest child abandonment rates in the world. For every 1 child found alive, 2 are found dead. The ones with medical needs are not adoptable and are overwhelmingly left to rot in hospitals. While she was learning all of this, Tarryn and Christoff had their first biological child. Shortly after, they were approached about another child with Down syndrome, this time a boy named Joshua. Feeling this pull yet again, they decided to adopt Joshy. At this time, Tarryn and Christoff and their two children moved to another small, rural area of Zululand called Ingwavuma. Christoff would be taking over a senior medical position at the extremely under-resourced and strained Mosvold Hospital.

After the decision to adopt Josh, the Bells became known for their care for children with complex needs as these children were so rarely adopted in South Africa.  In 2018, settled in Ingwavuma, Tarryn received a call about a little boy named Si who had been abandoned and likely had Down Syndrome. The boy had been found by a local runner in a bush outside the city of Soweto; he was on the brink of death. The woman calling wanted to know if Tarryn was interested in adopting. At the time, with all the new changes, Tarryn knew this was not possible and politely declined. But the woman was persistent. She called Tarryn several times, saying she knew this was Tarryn’s child. Finally, the woman called again to tell Tarryn that the situation had changed; little Si did not have Down Syndrome. He had Edward’s Syndrome, Trisomy 18, not 21, a condition deemed “incompatible with life” and he was in desperate need of palliative care and a place to have a peaceful end of life. Now the Bells couldn’t shake the feeling that this woman was right, that this child was supposed to be theirs in some way. Tarryn remembered her feelings after Ncami’s death, the feeling that she would sometime again love children who would die. The decision was made – they would become the legal guardians of Si and to address his needs and the needs of countless other children in need of end-of-life and palliative care, they would open Butterfly Palliative Home. This would not only be Si’s home but the home for children in the same position.

From there they went to work. A small home on their property in Ingwavuma was converted into a hospice/orphanage. Tarryn, in her ever-visionary ways, had the amazing idea to train and hire widows from the Ingwavuma, where jobs are desperately needed, to be the caregivers in Butterfly Palliative Home. In this way, Butterfly was and still is successful in part due to the love and community found in Ingwavuma, a most unlikely place. Since then, Butterfly Palliative Home has garnered national and international attention. In 2022, they were able to move from their 3-bed home that had the capacity for 6 children to an entirely new house that has 12 beds with a capacity for 12. The new home includes better medical equipment, a kitchen, an updated “creche” or pre-school environment, and a special end-of-life room for kiddies who are acutely struggling and need a bit more peace, attention, and care. The new house truly allows for the mission of Butterfly to reach its fullest potential. As Tarryn herself puts it, “Children’s only job is to be children.” Their only job is to play, laugh, enjoy, and grow in their own, special ways. Butterfly enables them to do just that, to not live their entire, shortened lives lying forgotten in a hospital bed. Moreover, the philosophy of Butterfly is to allow them to be children to the fullest extent, meaning that if the children want to keep playing and not have oxygen cannulas in their noses at that moment, it’s their right to refuse. They are in charge here, in the most beautiful way possible.

The Butterflies’ Stories

Josh

Joshy-Josh is the sweetest 9-year-old around. Josh’s biological mother had end-stage AIDs and because of this, she could not carry Josh to full term. He was born prematurely with Downs Syndrome and his mother died, leaving Josh to an adoption system that was not in his favor as a child with disabilities. At 1 year old, Josh was adopted by the Bells where they discovered that along with Downs, Joshy also was on the autism spectrum. He was extremely developmentally delayed, both physically and mentally. The Bells were unsure of whether he would walk and they were told many times that it was unlikely Josh would ever talk.

With the amazing love of parents like the Bells and his caregivers at Butterfly, Josh has completely defied expectations. He is not only walking but running around the home, causing all types of mischief. Although he can say no sometimes, Josh is still non-verbal the majority of the time. That, however, does not stop him from communicating. My favorite thing about Josh is that you never know what could be running through his head – one moment he is silent, playing with a toy, and the next he is screaming in absolute delight or singing his signature, babbling song. Although Josh is not an end-of-life patient, Butterfly is his home given his complex care needs and how much he has grown to love his caregivers and siblings. He has so much to teach all of us about beating to our own drums and living a life of joy.

Joshy Josh

Sunny

Sunny Bunny was one of Butterfly’s first babies. Sunny came to Butterfly at the age of 4 but was given up by her biological mother at 1 year old. She is living with Down syndrome complicated by an inoperable congenital heart called a ventricular septal defect, or VSD, which is essentially a hole between the chambers of the heart that are responsible for pumping blood (the ventricles). Sunny’s VSD has led to her developing Eisenmenger’s syndrome, which is a specific type of pulmonary hypertension (high blood pressure in the lungs) that is associated specifically with VSD and other congenital heart defects. All of this means that Sunny’s heart has to work extra hard to pump blood since its capacity to do so is quite decreased. This means that most of the time, Sunny has a high BP with an extremely low oxygen saturation level. Healthy humans typically have an O2 saturation of 95% and above. On any given day, Sunny has sats ranging from 75%-89%. While she is doing well, you can’t underestimate the precarious nature of her disease but you are constantly having to remind yourself that this vivacious girl is truly so sick.

And still Sunny is the absolute embodiment of her name. As Butterfly’s oldest child, at 10 years old, she takes her older sister’s responsibilities seriously, often trying to spoon-feed the other children in the same manner that she sees the caregivers do or trying to claim she is Teacher Sunny and assigning everyone a seat. Sunny has reached 10 years against all odds and she is testing out the limits of her role as house adolescent. She can be stubborn, simply saying no to everything or shaking her head and giving you the cold shoulder. Recently, when I was trying to get Sunny down for her nap, she declared she was the “mama” and I was Sunny; I was without choice – I had to lay my head down while she rubbed my back as I do for her and pretend to be sleeping. But most of the time, Sunny uses her commanding voice for good – to declare which song should be playing on the Butterfly’s television. Amazingly, Sunny has memorized almost every single YouTube KidzBop dance and is happy to perform for you. Her favorite song though, “This Little Light of Mine” or as Sunny calls it “Let it Shine,” is most often playing and you will find Sunny singing at the top of her lungs and doing her dance routine. She is truly the funniest girl – after several times watching her perform “Let it Shine,” I realized she would always tuck her shirt into whatever pants she was wearing that day. I was very confused at first, thinking maybe this was something she did to prepare to dance. It was only later that I realized all the dancers to the song on YouTube had their shirts tucked in; Sunny thought to dance it out, she also must tuck her shirt. Quintessential Sunny.

Sunny Bunny

Ollie

Ollie arrived at Butterfly Home in 2022 when the new house opened. Ollie’s case is one of the more complex cases at the Home, both in regards to medicine and psychosocial well-being. Ollie was born to a young mother with AIDs. Healthcare professionals’ attempts at PMTCT (prevention of mother-to-child transmission) failed. Just after birth, Ollie contracted HIV. His decreased immunity from HIV, coupled with malnourishment, left him vulnerable to disease and he contracted several pulmonary viruses, leaving him with chronic lung disease and oxygen dependence, as well as meningitis all by 2 years old. At this point, Ollie was temporarily abandoned to the hospital system and lived in and out of the hospital until the age of 3 when his birth mother reassumed care. Between the ages of 3-5, Ollie was given his HIV medication extremely irregularly, if at all, leading to full-blown AIDs. He also developed juvenile hypermobility syndrome, which made his legs extremely weak and unable to hold his weight and he had extreme trouble with swallowing. Ollie now required a wheelchair and again experienced malnourishment. After more episodes of non-compliance in giving his AIDs medication and frequent, prolonged abandonment, Ollie was removed from his mother’s care and placed at Butterfly Home. The team at Butterfly has gotten his AIDs medication regimen under control, although his other lapsed medication plans and his viral load have caused him to be on an adult regimen rather than a peds regimen. However, due to his extremely compromised lungs, Ollie is extremely likely to suffer a pulmonary crisis that will eventually lead to an end-of-life situation.

Having been older when he was removed from his parent’s care, Ollie at first struggled with depression but over the past two years, he has truly found a home here. He is now 8 years old and able to eat all foods on his own (although Sunny likes to feed him), he gets around quite efficiently by crawling or by flashing his smile at caregivers or volunteers to carry him, and he is quite the jokester. His current favorite trick is being a copycat which causes all the other kids to break into laughter. While his depression is certainly gone, it is clear Ollie still struggles with abandonment. If I were to put him down to go play with or tend to another kid, he would immediately clam up, eyes wide, and ask why. Luckily, Ollie has found two best friends, Sunny and Yassie. The trio is inseparable, especially Sunny and Ollie. They refer to each other as “my best fwend.” On his own, Ollie has quite the imagination. His favorite game to play with me was looking at his “manual” (the example drawing that comes with his pack of markers and directing me on how to color the coloring book outline he’s picked out. There is no rhyme or reason – he’ll look at this tiny slip and study it, then declare that we need a green or orange and count me down from 3 to start my coloring. I couldn’t ask for a better coloring partner than Ollie.

Ollie

Smangi

Mangi-mangi is another 8-year-old boy and also one of Butterfly’s original residents. Born to a family of 12, Smangi was quickly diagnosed with hydrocephalus, a buildup of cerebral spinal fluid that surrounds the brain and gives the appearance of an enlarged head. In addition to appearance, hydrocephalus can cause numerous issues; in Smangi’s causes he has limited movement and requires a wheelchair, and he has developmental delay and thus is non-verbal outside of sounds and noises. After this diagnosis, Smangi was abandoned in the hospital system. It was also later discovered that Smangi was blind due to his condition. The typical treatment for hydrocephalus is a shunt, a tube that essentially acts like a drain for cerebral spinal fluid. Smangi received a shunt at 4 months old which later failed in 2017, when Smangi was one. Smangi qualified for another shunt at this time. After this shunt, Smangi developed other symptoms like epilepsy and was deemed a risk for future re-shunting which means when this one fails, he will not receive another. It will likely cause Smangi to deteriorate.

However, with his symptoms managed for the moment, Smangi has thrived and reached 8 years old through the palliative work of Butterfly. His lack of sight has made his hearing his greatest strength. He is very aware when people are approaching him and he gets excited. He gets so excited that he begins to beat-box. You read that correctly, Smangi is Butterfly’s resident beat-boxer. He has such a portfolio of musical sounds he can make, from clicks to synth-like singing to mouth drumming. Every day, composer Smangi creates his music and revels in it. In addition to his talents, Smangi is one of Butterfly’s happiest residents. We all have said that if Smangi is crying you know something is wrong because he never cries. Instead, Smangi is often found with the largest grin on his face, an almost permanent smile. I will also give Smangi credit for being the best eater of the Butterflies who require spoon-feeding. That being said, on one of my last days at Butterfly, snack time was yogurt, and Smangi, who always eats yogurt, decided that that was the most atrocious thing I could be serving him. He ate it but he gave me looks of absolute disgust between every bite. Only when I told him he could be done, did I finally get his normal smile to return.

Smangi

Langa

Langa arrived at Butterfly Home in 2022 when he was 6 years old. Langa is now 8 despite increasingly complex health issues. Langa suffers from spastic cerebral palsy that has left him effectively paralyzed with his only movement being in his face. He has cortical blindness, deafness, epilepsy, and suspected schizencephaly, or clefts in his brain. All of this has left Langa with severe disability. Additionally, Langa was not permitted by his doctors to get a PEG, a percutaneous endoscopic gastronomy, tube which helps deliver feeds directly to the stomach. However, due to his limited movement, Langa has a lot of difficulty swallowing. This means he has had a lifelong battle with severe malnutrition as he is not able to effectively get food liquids down. It also means he has a high risk of aspirating, which is essentially choking caused by a foreign body, such as food, entering the airway. Langa has had several bouts and likely will continue to contract, aspiration pneumonia, a type of fungal infection that occurs due to repeated aspiration. For someone like Langa, these infections can be extremely deadly. Not too much is known about the circumstances of Langa’s abandonment other than it being soon after his birth.

Despite his limited ability to communicate with those around him, Langa is another one of Butterfly’s happy guys. He is quite content to lay amongst his siblings or sit supported in his wheelchair next to Smangi. He is also such a good sport at feeding times, even though we know it is extremely hard for him. During my time with Langa, I felt it was important to provide some light touch stimulation for him, just to let him know we are there and he is loved. This sometimes meant holding his hand stroking his head or dipping into Butterfly’s collection of sensory toys! While Langa might jump a bit at first, since he can’t see or hear, you see in his eyes that he always appreciates the comfort of others.

Langa

Sadia

Sadi is another one of Butterfly’s longer-term residents. Sadi has a complicated medical history. When she was born, she suffered from hypoxic-ischemic encephalopathy, essentially an event where an infant’s brain is deprived of oxygen or blood and leaves the child with severe issues. In Sadia’s case, she developed spastic cerebral palsy, neurodevelopmental delay, gastroesophageal reflux, and Pierre-Robin’s syndrome which affects a child’s swallowing mechanisms. Sadia was given a PEG for feeding at this time. However, even without being fed by mouth, Sadia is at extreme risk for aspiration, and like Langa, Sadi has often contracted aspiration pneumonia. These episodes can cause her to deteriorate rather quickly but she has shown she is a fighter!

Despite receiving a diagnosis of neurodevelopmental delay, Sadia is quite the smart cookie. She surprised everyone at Butterfly by learning to use a communication board, a board with pictures that she could point to to articulate her thoughts and feelings. She now uses the board regularly and is quite chatty. Sadi also is famous for knowing what she wants – give her the wrong toy and she’ll scream but the caregivers have found that she can shake her head yes or no if you point to an object. She and I have had some funny times together pointing to every object in Butterfly Home just for her to shake her head no. I am amazed by this little girl and her extreme intelligence; I was in awe the first time we had a conversation using her communication board. If communicating wasn’t enough, Sadi shows resilience in that she has discovered she can move one of her hands and arms effectively. She can grab onto things, hold your hand, and even try to brush her teeth. She is the definition of how palliative care can help you LIVE.

Sadi-Sads

Yazzie

Yazzie-Pazzie was brought to Butterfly Home at just 4 months old. She was diagnosed at birth with atrioventricular septal defect (AVSD). Unlike Sunny’s VSD, Yazzie has holes between the ventricles and atriums of her heart on both sides. Her diagnosis was deemed completely inoperable so Yazzie has suffered from pulmonary hypertension her whole life. In addition, Yazzie has an undiagnosed genetic abnormality due to complicated family social circumstances/background. Whatever this genetic disorder is, it was supposed to present as stunted growth, dysmorphic facial features, and possible stunted development. Yazzie is extremely at risk for cardiac failure and has gone into failure several times. She has been taken to the end-of-life room several times and has also had discussions with Tarryn about what it might mean for her life to end. Like the miracle she is, Yazzie has not only rebounded every time but has also articulated that she knows when she does go, that she will be an angel.

And when I say Yazzie is truly the most special of children I truly mean it. At baseline, Yazzie has an oxygen saturation of about 65%, sometimes it can be higher and sometimes it can dip down to the 50s. However, you could never tell because Yazzie learns, plays, runs, screams, sings, and dances with all the energy that her tiny body can muster. Now at 6 years old, Yazzie has surpassed everyone’s expectations – while her physical growth is stunted, she is the sharpest tool and the shed, often a leader in her creche classroom and quite the storyteller. She’s also the best big sister to everyone in the house, even those who are older than her, given that she’s been there for so long. When Ollie arrived at Butterfly, she was quick to take him under her wing and show him the ropes. She, Ollie, and Sunny have been inseparable since but she can also be quite content playing or resting on her own. She’s mature beyond her years. While Yazzie wants to be able to do anything and everything, she can also be good at telling you her limits. One time she insisted that she, Sunny, and I go on a walk to, in her words, “see the beauty.” She walked by herself on the way out but asked to be carried on the way home so she could catch her breath. Sometimes, getting her to sit with her oxygen can be a challenge and we always allow her to say no. But her skin and lips and fingers and tongue can be a dead giveaway; they turn bright blue when she is oxygen-deprived. Usually, if you sweeten the pot with some juice or milk given in her purple baby bottle (she will not drink from anywhere else), she will sit with her oxygen on. Yazzie’s zest for life, wisdom, and endlessly fun energy is infectious. She’s the type of kid who can convince you anything is possible.

Yazzie

Amy

Amy is a very unique Butterfly case. About a year ago, when Amy was 5, she was removed from her home due to extreme neglect. Amy was born with Down Syndrome and was the last child of an extremely large family. Although details of Amy’s story are not all known due to the severity of the situation, it appears that Amy suffered neglect because of her diagnosis. When she was found in her home by authorities, she was left alone, in a corner of the house in conditions that were not befitting of any type of life. She was covered in dirt, her excrement, and disease including scabies so bad that doctors originally assumed she had gangrene and thought they might have to remove her legs. Additionally, Amy was never taught to walk or speak so her legs were atrophied from disuse and she was essentially mute. She was immediately removed from her home and given over to the hospital system. Upon hearing about Amy, Tarryn fought with the legal system extremely hard to bring Amy to Butterfly. Due to her Downs diagnosis that had not been monitored, it was quite possible that Amy would have the common heart defect typical of Downs children in South Africa. Without anywhere else to place her, the courts approved Amy’s transfer to Butterfly Palliative Home. When she arrived, Amy was in extremely poor condition; she had numerous infections, no effective way to communicate, and no ability to do things on her own.

            After arriving at Butterfly Home, things began to change for Amy. Fortunately, with proper testing, it was discovered that Amy did not have the heart defect associated with Down syndrome. This meant that Amy was no longer a palliative care candidate. However, due to her otherwise extreme condition, Amy was permitted to stay at Butterfly until her next court date where courts would decide the future of her placement. While Amy did not require palliative care as a means of treating a terminal illness, palliative care helped Amy thrive. In her year at Butterfly, Amy’s infections were cured, her health restored, and the immense love and care provided allowed Amy to experience life differently. She shocked everyone with how quick of a learner she was. When she first came to Butterfly, she could only manage a few gibberish words. The staff took fondly to calling her Peppezza because she seemed to refer to herself with this funny word. Even now, Amy will respond to Amy or Pepezza or Pepe. Within only a year, Amy has learned to speak in full sentences, she memorizes songs and dances (her favorite being Itsy Bitsy Spider right now), and she is getting the hang of walking by herself. Her legs can still sometimes feel foreign so she will often flash her amazing smile at me and I can’t say no to picking her up. One time, I was going to find Amy to bring her outside to play with the other Butterflies. She got so excited she began to run but the fact that her legs could move so fast shocked her and she screamed before grabbing onto me for support. It was a very comical moment but also shows just how much growing Amy has been able to do at Butterfly. Amy has also been allowed to explore her emotions at Butterfly; she’s able to better communicate through laughter and smiles now, and she has certainly learned how to express distaste. Amy’s case will appear before courts this year and she will be adoptable! Tarryn and everyone hope that Amy will find the perfect family because she is truly a wonder.

Amy

Molly

Molly-Mols is a 2-year-old girl who was diagnosed at birth with encephalopathy resulting in a seizure disorder. Soon after birth, Molly started becoming septic and her organs began to fail. Doctors were able to control the sepsis but Molly had suffered a hypoxic event, meaning she was without oxygen. This event is suspected to have caused cerebral edema, fluid on the brain, that resulted in injury to Molly’s brain. Since that moment, Molly has had neuropathic pain, which is pain that results from a dysfunction of your nervous system or damage to your nerves directly. It’s also suspected that Molly is blind. All of these events at such an early age left Molly with extremely abnormal neurology; she is unable to sit unsupported, unable to make any sort of noises or communication, and she often appears to “space out” and it may take a bit to get her attention again. On top of all of this, Molly’s seizures are extremely difficult to control. With all of these complex health issues, Molly’s parents abandoned her when she was around 4 months old. Not much is known about her birth history or social history, but a special shout-out to Umduduzi (previous post) is needed because they helped facilitate Molly’s arrival in January of 2024.

At Butterfly, Molly has not only been on a regimen of drugs that control her seizures but she is also given small doses of morphine that control her neuropathic pain. Molly is yet another perfect example of the power of palliative care. Although she is unable to communicate, spending time with Molly allows you to become familiar with her facial expressions and how to translate them to her needs. It’s very easy to tell that if she’s irritable or overly emotional, she is likely in pain. When I first arrived, Molly had a bought of what could only be translated as chronic pain. She was very out of it, very tearful, and not sleeping well. As her medication regimen took hold and was adjusted to address her needs, Molly became a whole new kid by my third week at Butterfly. She was smiling and giggling almost all the time, at seemingly nothing, just happy to be pain-free. She also rediscovered her legs and although Molly’s movement will always be limited, she spent my last week at Butterfly doing super impressive little kicks, laughing the whole time.

Molly-Mols

Rosie

Rosie is another one of Butterfly’s resident 2-year-olds and she has a particularly complicated medical history. Rosie was born with quadriplegic cerebral palsy, cortical blindness, and pseudobulbar palsy (a condition that affects the muscles that control facial expressions, swallowing, and jaw movements). Due to all her complex needs, Rosie was abandoned to the hospital system after she was born. Sometime later, while she was at the hospital, Rosie developed severe laryngomalacia, a softening of the larynx that affects breathing, and she required surgery and a PEG (feeding) tube inserted into her stomach. During this surgery, Rosie suffered a hypoxic event, meaning she was without oxygen, which left her with further brain damage. When she was recovering from this initial surgery, doctors found that she had a vascular ring, a defect where branches of the aorta wrap around the trachea and cause breathing and digestive issues. This too required surgery. During this more extensive procedure, Rosie suffered another hypoxic event, this one more damaging. When she woke up post-operation, it was clear that Rosie now had another issue; instead of the tight muscles and decreased flexibility associated with her cerebral palsy, Rosie had lost any ability to use her limbs. In other words, she was essentially permanently limp.

When she arrived at Butterfly in May 2023, Rosie was just shy of one year old. She has now been at Butterfly for over a year and has come into her own. While Rosie’s communication is limited, both from her being non-verbal and lacking movement, she is easy to read because she has three facial expressions: calm, laughter, and crying, Her little smile can light up a whole room. When I first came to Butterfly, I immediately was drawn to Rosie. Because of her inability to move, it was hard to know how to include her with the other children as she is often most comfortable lying in her crib. However, I found that she lit up whenever a caregiver or I would wrap her up in a blanket and bring her among her siblings. The first time I did this, I was admittedly nervous; holding someone so small and so limp in your arms feels like you have far too much control. But Rosie is so patient and you can tell she just wants to be with her Butterfly family. While Rosie’s road ahead is still unclear with all of her complex conditions, it is obvious that Rosie loves her home and family.

Rosie

Hope

Miss Hopey Hope is Butterfly’s youngest resident at only 11 months old and she is their newest resident having arrived this past September. Hope was orphaned soon after her birth due to her diagnosis and the social circumstances surrounding her conception. She was delivered prematurely and diagnosed with craniosynostosis, a defect in which your skill is fused such that your brain, as it grows, will experience too much intracranial pressure. While this disease can be treatable by surgery after birth, this surgery is not available in South Africa. Essentially, this means that right now Hope behaves mostly like a healthy baby girl; as she continues to develop, her brain will grow and she will experience more acute symptoms of this terminal disease. In some ways, this makes caring for Hope emotionally very challenging. Unlike some of the other Butterflies who present as obviously very sick, Hope does not. When she does become sicker, her condition will deteriorate rapidly so Butterfly has palliative advanced care plans in place to make sure her symptoms will be managed as they appear.

These days, Hope alternates between sleeping and eating. She is the model baby in many ways – sleeping for hours on her own and eating when prompted. During my time at Butterfly, she also seems to have discovered what standing is. She can’t support her body or head on her own yet, but she is constantly straightening her legs and pushing off, attempting a standing position. She is clearly in a hurry to imitate some of her older siblings. Hope is simply a joy to be around, not just because she is absurdly cute but also because she gives the best baby coos in the whole world.

Hopey

Aggie

I saved Aggie’s story for last because I fell completely head over heels for Aggie during my time at Butterfly. I loved every single one of the Butterflies with my whole heart but something about Aggie just grabbed me differently.

Aggie is the last of the sassy trio of two-year-olds at Butterfly. Doctors believe that when Aggie was conceived, her birth mother was abusing drugs, likely crystal meth. When she was born, Aggie presented with some of the signs – dysmorphic features, nystagmus (uncontrollable eye movements), and microcephaly (decreased brain volume). In addition, Aggie was diagnosed with schizencephaly, a series of abnormal clefts, or holes, between the hemispheres of her brain. These clefts cause Aggie to have excessive seizures and have contributed to her global developmental delay. When she arrived at Butterfly in October 2022, at just about 7 months old, Aggie was a bit of a mystery to the staff without too much being known about her birth history and condition. However, it was soon recognized that she required better seizure control as she was having regularly occurring seizures multiple times a day. During her seizures, Aggie developed a tic to bite down hard on her hands; for her protection, caregivers began putting socks on her hands!

On my first day at Butterfly, I was in charge of bathing all the kids. When I had just finished cleaning Aggie and had placed her on the changing table to dry her off and dress her, she began to have a seizure. While Aggie’s seizures are controlled, she usually will not receive medication unless she goes into (a seizure that lasts longer than 5 minutes or where consciousness is lost). In this case, the seizure lasted only about a minute and I was able to soothe Aggie enough such that she did not hurt herself. After that, Aggie and I were bonded. I learned quickly how dangerous this was – because Aggie’s hands are always covered, she loves other people’s hands, holding her constantly, tickling her, and just being there. If you put her down, be ready for some crying. While I told her many times I could not spend all day holding her because I had to play with everyone else, she screamed (though in all fairness, she screamed anytime anyone put her down). I can’t truly explain why I felt so bonded to Aggie, perhaps it was because of that initially scary moment that we got through together, but all I know is in some alternate universe, I would have taken Aggie with me. I said so several times to several people, all of who simply told me I could not adopt a daughter during my Watson year once they realized how serious I was. Of course, they were right but it did not stop me from fantasizing about a world in which Aggie came with me. On my last full day, I sat with Aggie in my lap, and snuggled in her favorite position, while everyone else was at school. I bent down and kissed her on her forehead and she started laughing and smiling. I had seen this smile and laugh before, after I or the caregivers had finished tickling her face (her favorite) but never from this. I’ve never felt the type of happiness that I felt at that moment. It only made the final goodbye that much more special and that much more challenging.

Aggie-Ags

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What I do know is that Aggie and her socks, and all the other Butterflies, have given me and my path new meaning. I know that wherever I go this year and beyond, I will carry them with me. They will forever be a reminder of the need for this work and of the first time I recognized I was completely capable of doing it. My time at Butterfly has changed me in unrecognizable ways that I am continuing to process. I haven’t gone a day since leaving so I don’t rewatch videos of Yazzie singing, Ollie dancing, or Aggie giggling while I tickle her face. I miss them with all my heart.

Ending the first half of this crazy journey at Butterfly ensures me that what is to come will not only be fueled by this time in South Africa but will be even more meaningful because of my experience there. I feel as though I have taken on 12 new “whys” for why I want to continue working in palliative care or why I want to be a doctor more generally. If this year were to give me nothing else, this would be enough.

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If you feel inclined, donations can be made to Butterfly Home via https://butterflyhome.org.za/get-involved/ .