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Kelsey’s Fund

Our daughter Kelsey was born on April 20, 2018. We picked a name we felt was the perfect complement to her "lucky" Irish heritage (I'm Irish), and chose the name Kelsey because it means "brave" in Gaelic. Lucky and brave--very soon we would realize how much she'd need every ounce of those attributes!


During my pregnancy we found out that she had a rare condition called "gastroschisis", in which a portion of the intestine sticks out of the belly wall. It occurs only once in about 4,000 babies. But my husband and I were told it's not the end of the world because these cases have an excellent prognosis and are corrected at birth with only some minor belly scarring. As she developed in utero and very near term, amazingly the gastroschisis completely reversed itself and her belly closed up normally. We were excited at first because everything miraculously seemed to be back on track. But this type of spontaneous reversal, called a "vanishing gastroschisis", is actually a rare complication of gastroschisis that may result in severe damage to the gastrointestinal tract. When Kelsey was born, she looked perfect from the outside.


Unfortunately, things on the inside were not so perfect. Her belly was distended, and radiologic images showed a massively dilated small bowel. The vanishing gastroschisis lead to twisting or strangulation of the once eviscerated bowel. This resulted in the even rarer condition of what is called "vanishing gut syndrome." A large section of the bowel lost its blood supply and literally disappeared. Mortality is as high as 70%. It's so rare that between the years 2000 and 2013 there were only 13 cases reported in the medical literature. Treatment is aggressive and involved an extensive surgery to try and lengthen the remaining bowel. But this too often fails, resulting in the need for an organ transplant, which itself has an exceedingly high mortality rate. Of those 13 cases reported, the babies needed to be fed through their veins by total parenteral nutrition (TPN). Thus, even if they escaped needing a bowel transplant, they then faced the terrible complication of TPN---complete liver failure. So, of these cases, 12 were born alive and 7 had aggressive treatment. Only two cases were confirmed to still be alive in infancy.

You can imagine our shock and fear when we found out that our seemingly perfect little Kelsey had this horrific diagnosis. I cried a lot. I mean, what else is a mother to do with that kind of news? No sooner was I holding Kelsey in my arms, then I was being told she needed to have an immediate bowel surgery to decompress the distention and lengthen what they could of what little intestine they had to work with. It was so surreal to me because she looked so perfect, so beautiful, and so comfortable on the outside.
 
On April 23, 2018, at Yale Children's Hospital, surgery was performed by Robert Cowles, M.D. An “end-to-end anastomosis” was done in which what was left of the entire length of her ileum (the largest part of the small intestine), her entire ileocecal valve, and half the length of her colon was all removed and the ends were connected. Dr. Cowles decided to do a second procedure called a serial transverse enteroplasty (STEP) in an attempt to lengthen the small amount of remaining bowel. As a result of all this, she necessitated TPN along with liquid feeds through tubes sticking out of her belly. 


This is where the bravery part comes in. If she was going to survive, she would have to defy the medical odds. When the procedure was completed, she was brought back to the intensive care unit, and there she would stay, enduring a multitude of procedures. She ended up with what's called a "G- tube" that sticks out of her belly where she is fed. In addition, she has what's called a Broviac catheter sticking out of her chest through which she gets her life sustaining liquid feeds. We had our ups and downs in the Neonatal Intensive Care Unit (NNICU). At one point Kelsey went from taking a small amount in a bottle to refusing to let anything touch her mouth without vomiting. It was so heartbreaking because she was so hungry at times, but with every feed, Kelsey would choke and vomit. As tiny as she was, you could see her frustration. Watching her in my arms and wiping away her little tears was indescribably heart wrenching. To make matters worse, at one point we were told by the neonatologists that she had "failure to thrive" because she was not gaining enough weight and her bowel was not working yet. As days turned into weeks, things turned darker. Kelsey's bilirubin (a marker of liver function tested in the blood) started to elevate. If it continued to elevate, we’d have to start talking about liver failure and the need for a transplant.


But our brave Kelsey kept toughing it out, enduring obvious pain and discomfort day after day. It was literally killing me to watch her this way. Then, I don't know how to explain it, after one day of retching in pain I swear she looked at me with steely eyes, almost reassuring me, showing me her strength. Was I imagining this? Was this perception of bravery in this little morsel of mine nothing more than a delusional projection on my part? Maybe. Maybe not...All I know, is that day something stirred in her. She seemed renewed, as if a blessing touched her, and she fought on. Day after day, as the weeks turned into months, something lucky but maybe miraculous started to happen. Her bilirubin inexplicably completely normalized. Her liver, for at least the time being, was and is fine. The doctors were astonished. Also, she began to tolerate some oral feeding. Soon she began taking a small bottle and now even has some rice cereal. The nurses were stunned. It's difficult to describe how much this defied the odds we were given. The doctors were shocked. They simply could not fathom how she had come that far with what little she has to work with, coupled with what was such a grim prognosis. As a result, after 144 days in the NNICU on September 10, 2018, she was finally transferred out of the unit and into a regular pediatric room. Though she still had her G tube sticking out of her little belly along with the Broviac catheter in her neck, at least she got to enjoy toys, other children, visitors...sunlight.


After another 76 days on the pediatric surgery floor for a total of 220 days in the hospital from the day Kelsey was born, on November 26, 2018, Yale decided to send Kelsey home. Unfortunately, it was no day of celebration, as extreme anxiety quickly set in for us due to the complex regimen of 24-hour home care and daunting nursing support she would need to survive outside the hospital. She would be receiving almost all her nutrients by way of TPN and just a small trickle of liquid nutrients through the g-tube coming through her belly.
 
Yale’s pediatric gastroenterologist Anthony Porto, M.D. came into the case with the responsibility of managing her nutrition by coordinating and precisely adjusting her TPN and g-tube feeds. We learned that, for TPN dependent patients like Kelsey, it is literally critical that they have a healthy pH of the blood. The pH is measured on a scale of “0”, being the most “acidic” or to a high of “14”, being the most “alkaline” or “basic”. A neutral pH is equal to “7”. Apparently, the body maintains itself in a slightly “basic” alkaline state of 7.43 and is exquisitely sensitive to even the smallest changes. The biggest damage to the body is when the pH goes down from that number, so much so that a pH of down to 7.3 is almost incompatible with life without immediate intensive medical intervention. For Kelsey and her very short bowel, was that, as a result of frequent loose stools, she loses bicarbonate from the bowel. Bicarbonate is what is the body’s “base” and the way it alkalinizes (or “de-acidifies”) the body. It is naturally produced to offset and neutralize “acid” build up, thus keeping the body on the “basic” side.
 
With “acidosis” being a big concern, Dr. Porto sent her home on a TPN containing an acetate concentration of 35.3mEq (acetate is the only way to raise the bicarbonate in the TPN to make it more basic and less acidic, since, in Kelsey’s case, bicarbonate itself cannot be infused in this way).


From that point on, I sent weekly email updates to Dr. Porto and Dr. Cowles. Kelsey, despite her incredibly fragile condition, somehow tolerated the daily routine of not only dealing with numerous diaper changes and bouts of profuse vomiting multiple times each day, but also changing her g-tube dressings multiple times a day. With that, I also contended with mixing formula around the clock to refill the g-tube feeds as well as cycling the bags of TPN being formulated and ordered by Dr. Porto and delivered to us each week at the house. Add to that, weekly sterile dressing changes and sterile Broviac cap changes were also part of the routine. In the beginning, we had health aides coming in each week to do the Broviac dressing and line changes, but after observing them fail to do the procedures in sterile fashion, leaving Kelsey with a line infection, I insisted on doing everything myself.


in the months that followed, Kelsey had received enough nutrients to be managed at home and even progress close to a normal growth curve. With our coordinated wife-husband shifts 24-hours a day, along with an au pair nurse we finally brought on board to live with us and help with Kelsey, she began to tolerate small advancements in her feeds. She actually got to the point that I was able to feed her orally more than 500 calories daily (a mix of bananas, avocado, chicken, almond butter, etc.). We also had weekly physical therapy appointments to help Kelsey start to move more normally, as she was kept in bed most of her hospitalization. In addition, we had speech therapy start working with her weekly as well. Kelsey was doing so well at home that by mid-April, Kelsey was taking in most of her caloric needs through a combination of oral feeds and G-tube feeds, thus reducing the caloric reliance on TPN to less than half her calories and put her on-pace to be independent of TPN by approximately the age of two. Apart from that small amount of additional calories and electrolytes, the only remaining, but extremely important, reliance on TPN was to keep her acid-base balance in check by using acetate to off-set the bicarbonate she was regularly and expectedly losing in her loose and relatively frequent stools (as is usual for such short bowel patients). It seemed we had the right combination and all Yale had to do was to carefully monitor her blood work, hold the TPN steady, and advance the oral and G-tube feeds as we decreased her dependence on TPN down to zero. During this time, Kelsey’s condition improved quite significantly early on and her TPN dropped to only about 20-30% of her caloric needs.


But things were about to get a whole lot worse without us having any idea at the time. We only discovered the prescribing error after the debacle that followed. What had happened was that Dr. Porto, knowingly or unknowingly, began approving orders to lower the acetate in Kelsey’s TPN. At first, around February 20, 2019, with no apparent justification, he ordered a very slight decrease of the acetate in Kelsey’s TPN to from the original 35.3mEq, down to 34.15mEq. 
 
On March 14, 2019, again, unknown to us at the time, Dr. Porto then ordered another very slight decrease of the acetate in Kelsey’s TPN from 34.15mEq, down to 31.13mEq despite not ordering any recent blood test levels showing a bicarbonate level that was too high, which would have justified this change. So here again, there was literally no basis for the change. The only labs he had available to look at were from the month before, assuming he chose to look at those at all. Again, we don’t know why he made this change or on what basis he decided to start reducing the acetate. In fact, Kelsey, as indicated, was doing fine prior to these drops. Then on April 17, 2019, Dr. Porto inexplicably further reduced the acetate in Kelsey’s TPN even further from 31.13mEq to 28.11mEq. Again, there were no labs taken since the last order of TPN that would indicate any need whatsoever for such a change to be made and no clinical changes that would indicate such a change is needed, or even safe.


On April 20, 2019, implicitly trusting Dr. Porto’s competence, we began administering the mis-prescribed TPN, during which time Kelsey started looking sick and not herself. The next day she had 7 stools and appeared thirsty. Kelsey’s condition began to look bad, and I sensed something was very wrong but had no idea the cause was the TPN. As if things weren’t bad enough, on April 24, 2019, again, for reasons we don’t know, without our knowledge, it happened again. Dr. Porto again inexplicably further reduced even further the acetate in her TPN from 28.11mEq/liter to 25.09mEq/liter. The horrifying aspect of this particular drop in acetate, was that Dr. Porto had Kelsey get blood work done just two days earlier on April 22, 2019. Those results that Dr. Porto was supposed to have reviewed confirmed that her blood bicarbonate from was alarmingly below normal to a level at only 18mmol/L (normal range is 22-29mmol/L). It appears that either Dr. Porto made the mistake of neglecting to review these results, or he did, but then made a terrible mistake of not only failing to raise her acetate back up to where it should have been, but instead, lowering it even further. It was the evening of April 25, 2019, when we received Dr. Porto’s prescribed TPN. After what had been several days of Kelsey being infused with the TPN containing an acetate level of only 28.11mEq/liter, it turns out that this new order of TPN further reduced the acetate to only 25.09mEq/liter. The next day Kelsey appeared much weaker than usual, and I noticed she was uninterested in eating and irritable and couldn’t sleep. After finishing the previous two bags of prescribed TPN, April 27, 2019 was the first night that the bag of TPN ordered by Dr. Porto with the even lower acetate of 25.09mEq was administered to Kelsey. Sadly, it was that change on top of the others, that was the one that nearly killed Kelsey.
 
By 7:40am the next morning on April 28, 2019 (which happens to be my birthday), after just one bag of this toxic TPN, Kelsey looked so fragile and lethargic we immediately rushed her to the emergency room at Yale, and immediately informed Dr. Cowles by text and email. She began looking worse by the minute, so much so that I went into a panic as she appeared to be literally dying right in my arms.


At the emergency room, they quickly determined Kelsey had a severe “metabolic acidosis” with a venous pH on admission of only 7.09 as a result of her blood bicarbonate level being driven down to only 8mmol/L from the lack of sufficient acetate in her TPN. They began aggressively resuscitating Kelsey. Their efforts went on for hours. They literally saved Kelsey’s life. Once they stabilized her, Kelsey was transferred to the pediatric intensive care unit (PICU). While in the PICU, Kelsey continued to receive high doses of intravenous bicarbonate to counter the damage caused by all the acidic TPN she had received over so weeks, along with ample hydration to further restore her alkalinity. During that time, her surgeon Dr. Cowles and his fellow Dr. David Worhunsky told me that that had reviewed everything very carefully and discovered that Kelsey’s condition was due to an admitted mistake in the TPN prescribing. On April 29, 2019, Dr. Cowles said that the lowering of the acetate in her TPN by Dr. Porto was the cause of all this and that, as a result, he will now be taking over the TPN prescribing from Dr. Porto. During the remaining days, her TPN was restarted, and proper changes were made by Dr. Cowles to her TPN, resulting in an improvement of her labs with a blood bicarbonate level all the way back up to 28 and a chloride of 99. We were so thankful that Kelsey was alive. At the time our focus was not so much on the mistakes of Dr. Porto that nearly killed Kelsey, but rather relief that Dr. Cowles would now be in charge of checking and prescribing her TPN, and not Dr. Porto. But sadly, as you can probably guess, her ordeal was far from over. On Wednesday May 1, 2019, Dr. Cowles moved to discharge Kelsey. 
 
But, yet again, without a clear reason or our knowledge, Dr. Cowles himself made his own near-fatal error along the same exact lines as Dr. Porto which had brought Kelsey to the emergency room in the first place in a nearly comatose state of acidosis. The only difference was that Dr. Cowles same error was far more egregious than Dr. Porto unwittingly dropping the TPN acetate to 25.09mEq. This time with Dr. Cowles, putting himself in charge of writing the orders for the TPN, personally ordered Kelsey to receive an even far more acidotic swill in her veins by ordering the outpatient pharmacy to create a new TPN with “minimum acetate” and “maximum chloride,”, the lowest concentration Kelsey had received so far and far below the 25.05mEq level that brought her to the ER in the first place. Dr. Cowles’ TPN order was for an astonishingly low 13.7mEq/liter of acetate. That evening, again completely unbeknownst to us, we infused this latest and most toxic version of TPN. The result of this almost killed Kelsey a second time.

On May 3, 2019, after administering only two nights of the TPN Dr. Cowles prescribed, Kelsey began looking horrible. She was clearly being poisoned by the incompetently prescribed TPN. With each hour, she worsened to the point that she became completely stuporous. 
As we rushed Kelsey back to the ER her skin became pale, her eyes sunk and rolled back in her head, and she could not even lift her arms. As we approached the ER she began gasping for air. She almost died in the back seat of my car as I debated pulling over and having an ambulance pick us up. We just didn’t have enough time for that. I just had to keep driving. In the ER her bicarbonate was measured as low as 8, proving that the culprit could have only once again been the botched TPN and nothing else. But this time, it was too much for Kelsey’s little body to withstand, as she showed signs of early organ failure (e.g., kidneys). She went into severe shock. 



Attempts were made to fluid resuscitate in the emergency room. Ultimately, she was brought back upstairs to the PICU in critical condition. Once there, my husband was approached by Dr. Porto, at which time he apologized to him for making the initial mistake of dropping the acetate in Kelsey’s TPN, causing Kelsey’s prior near death experience. But he also made it clear that he took no responsibility for what had just happened, and that this time it was all Dr. Cowles. That evening, I heard from Dr. Cowles, as he broke the news to me that again, it was “again an issue with the TPN”. My husband confronted Dr. Cowles and demanded an explanation, with him taking over from Dr. Porto the ordering of the TPN, how on earth he could have personally screwed up the job exactly the same way but even worse this time despite having the benefit of a complete knowledge and understanding of what nearly killed Kelsey just a week earlier! Dr. Cowles, looking very embarrassed and in clear distress, lowered his head down shaking it from side-to-side, and with his hands in his pockets, kept saying how “terribly sorry” he was for the mistake and “that’s really all I can say”. My husband then stood there in the hallway in front of Dr. Cowles in silent dismay for what seemed like an eternity. Then Dr. Cowles broke the silence and lifted his head and went on to attempt to reassure him that Kelsey was going to survive this and promise that the same mistake will absolutely not happen again for a third time.
 
Unfortunately, unlike the first TPN debacle that Kelsey endured and was discharged in just a few days, this time the same mistake would prove to be too much for our brave little fighter. Purely as a direct result of the admitted mistakes Dr. Porto and Dr. Cowles made with Kelsey’s TPN, she would now be hospitalized for the next 40 days and never be the same.
 
Due to the grossly protracted hospital stay, Kelsey sustained a line infection as well as what was called a “nosocomial” hospital acquired viral infection. Even worse, due to failure to properly handle her Broviac line by nurses not flushing it with heparin after use and before capping, her line clotted off forcing her to return to surgery to revise the line. Due to her terribly weakened state, a resultant severe anemia developed. Kelsey necessitated blood transfusions. This latest mistake that left her stuporous, nearly comatose, and with early organ failure, was clearly non-recoverable. Along the way we would discover numerous miscues and conflicting efforts to get Kelsey back to her pre-morbid condition before the screw-ups with her TPN. The daily mismanagement of her TPN, feeds, and hydration was nothing short of reprehensible, as there seemed to be no central person running the case. The surgical team appeared to be in complete disarray as they would point the finger at the GI team to blame, who then would point it right back to surgery and say it was them. It got so bad at one point that no more attendings from either team would come by with any regularity. It was like they had just given up on Kelsey (or perhaps they may have felt that they had mucked up the case so badly that none of them wanted any more association). Instead, we saw a steady stream of medical students and resident physicians and fellows in training from the medical team, GI, and surgery all trying to manage Kelsey. They were the nicest doctors but also very unorganized because of their lack of experience. As a result, none of them really ever knew Kelsey’s case well enough and none would communicate clearly with the other. I’d see a rare visit from a rotating attending physician assigned to cover the service yet only peripherally aware of the case and complicated by a litany of miscommunications among them without the excuse of inexperience to explain it all away. It got so bad at one point that I pressed for answers from Dr. Cowles himself. His response was that GI was running the case, while GI (only fellows at that point) insisted it was surgery in charge. The answers made no sense.
 
As a result of the critical mistakes Dr. Porto and Dr. Cowles both made ordering Kelsey’s TPN in the beginning of all this that almost killed her, compounded by the continued poor communication issues, BioScrip, the Cromwell-based company that manufactures the bags of TPN, took the unusual step on their own volition and told Yale that they refused to fill any discharge TPN orders from Dr. Porto or Dr. Cowles for Kelsey unless and until they could PROVE that they had at least three stable successive blood draws with a proper bicarbonate level to support discharge. This was BioScrip putting their foot down and wanting no part of a third successive near fatal debacle. It was an amazing and bold position they took because rarely if ever does a group of pharmacists get together and tell doctors what to do and how to do their job. But clearly, in this case, their actions were sorely in order.
 
In the meantime, as our frustrations grew over who was in charge, I finally demanded an answer, or I was going directly to the hospital president. The result was a meeting in which they decided that the surgery service will run the case with GI in the background, that all the surgery decisions were final and not open to discussion with us, and that only surgery would communicate their decisions about Kelsey directly to me and only if I was there at the 8am morning rounds, after which there would be no communication with me that day and I would have to get any information regarding their decisions about Kelsey only from the floor nurse designated to take care of her for the day. Finally, we were also told that no feedback will be welcomed from me or my husband (I was actually told that by Dr. Cowles himself). I was obviously distraught by the news that we, as parents were being closed out in this way of all the decisions regarding Kelsey’s care.
 
During that time as a result of all the shock to her little body, Kelsey’s gut function had faded to only on half the G-tube feeds that she was on at home, far from her baseline, with doctors saying the prognosis of ever getting off TPN was now far less likely. As weeks passed, she was very different mentally, stared off into space, did not say “mommy” anymore, had a complete oral aversion refusing any food orally, and began grinding her teeth. While hospitalized, Yale’s surgery and GI teams still led by Dr. Cowles and Dr. Porto had continued to struggle with her condition, stumped at what to do, and puzzled by how to solve the TPN formulation in the wake of their horrible mistakes. To make matters even worse for Kelsey, in the weeks that followed, they made the mistake of shutting down what little feeds Kelsey was receiving, thus neglecting what remained of any viable intestine that might have been left. Kelsey’s functional status had deteriorated considerably under their inpatient care to the point that the Yale doctors were now saying the likelihood of her ever getting off TPN drastically dimmed along with her overall prognosis, as they felt there is little else they could do but go day-to-day and keep her hospitalized. 
 
They simply didn’t have the competence or expertise to deal with a case of this complexity and severity. As if all that wasn’t enough, further complicating Kelsey’s case, there was now an increasing concern at Yale that she may soon require intestinal transplantation or multi-visceral organ transplantation. Her condition has prompted Dr. Cowles to have another somber meeting with us in which he recommended that we consider the reality of Kelsey needing a multi-visceral organ transplant. He even suggested we consider the option of seeking care elsewhere.


Finally, on June 12, 2019, after another 40 days in the hospital, Kelsey was discharged far off her pre-morbid condition. As recently as April 4, 2019, prior to the initial TPN mistakes, Kelsey was only dependent on TPN for 42.5% of her nutritional needs and “only” required to be hooked up to the pump for 12 hours each day. At that point, most of her calories were being obtained orally and through the G-tube feeds, plus her intestinal rehabilitation and resultant nutrient absorption were trending strongly in the direction of independence from TPN within 19-21 months of age as reflected in the published research. Sadly, after all that had happened on this go-around, she was sent home still vomiting profusely and regularly, with a staggering weight drop from the 75th percentile to well below the 50thpercentile, tethered to TPN that ran most all of the day, and with the total caloric value of her daily TPN comprising precisely 75.91% of her daily nutrition. Bottom line, this all was a man-made doctor-made disaster.
 
The very next day out of the hospital, on June 13, 2019, we made plans to seek better care. In addition to the errors of doctors Porto and Cowles causing Kelsey’s decline, other limiting factors at Yale were that they had no formal intestinal rehabilitation program, no ongoing research being conducted in the field for which she might benefit, no access to specialized treatments and trial medications, no advanced care for extremely severe cases like Kelsey's, and, more ominously, no program for intestinal or multi-visceral organ transplantation should it come to that. At great expense, we sought care outside Connecticut, in New York at The Children's Hospital at Montefiore. They have world-renowned CHAM Intestinal Rehabilitation Center for children, with expertise specifically in the area of children like Kelsey with severe short gut. They have extensive experience in tightly managing TPN and a superb track record at increasing remaining intestinal viability while preventing liver disease and infections. CHAM Intestinal Rehabilitation Center also has ongoing research with multiple active Institutional Review Board (IRB)-approved studies, which Kelsey would have access. At the time, Dr. John Thompson, headed up the program and, after hearing from us about Kelsey’s case and her harrowing experience at Yale, he immediately accepted Kelsey into the program with him as her new doctor.
 
Over the months that followed, Dr. Thompson and his staff of intestinal rehabilitation specialists worked tirelessly to get Kelsey back to her baseline prior to the screw ups by Porto and Cowles. While they managed to improve her condition from the abysmal way Yale left her, with daily TPN requirements at 64.16% of her nutrition, Kelsey was still way off her baseline before the TPN debacle. Adding to the problems they had to deal with, Kelsey was still unable to tolerate the oral and G-tube feeds the way she was doing back in April.
 
By December 10, 2019, Dr. Thompson and his team had done their best to improve Kelsey’s condition, but her fragile condition resulted in numerous re-hospitalizations and practically continuous antibiotics for severe bacterial overgrowth that had taken over her little body. The Hospital at Montefiore had been a good move because they were at least able to slow Kelsey from her rapid downward spiral. Though they were not able reverse the damage that had been done at the hands of the doctors at Yale, they did buy her time. Their approach to TPN was very different than what Yale did with her. They radically changed things from continuous G-tube feeds to bolus feeds, drastically reducing the large amount of carbohydrates Yale was giving her, revising the TPN completely, and adding more vitamins. But with her weight only 22.5lbs. and evidence of early liver problems due to her already unnecessarily protracted dependence on TPN, Dr. Thompson got approval for Kelsey to try what at the time was an experimental medication called Teduglutide™. It was supposed to improve the function of her remaining intestine. Kelsey endured daily injections of this drug. She hated it and cried every time. The drug failed. Kelsey’s condition was too far gone. Dr. Thompson and his incredible team had exhausted the last of the non-surgical possibilities. In a last-ditch effort to try and free her from TPN and the organ failure and death it ultimately would cause, the final option there was a referral to their own surgical team for a second STEP procedure to try and lengthen what little was left of her bowel. So, we met with the surgery team there, but, when pressed, they did not seem confident that another STEP would do much for her given her condition, while possibly making her condition even worse. It seemed we simply ran out of options other than to just keep trying with what we had in hope her intestines would start to work and hope that her frequent line infections wouldn’t beat us.
 
In the following months, Kelsey suffered from six line infections in one year, only this time caused by bacterial overgrowth from her poor intestinal function that was now leaking into the blood and seeding the line. Each time it was another trip back to the hospital to be re-admitted and placed on IV antibiotics. Coincidentally these re-admissions tended to occur around special occasions like Mother’s Day and my birthday, and holidays like Thanksgiving and Christmas. But her little penchant for illness around these times would prove to be almost divine in nature. 
 
We found ourselves in the hospital for our literally second Thanksgiving in a row with yet another line infection. It was during that admission when, on November 28th, 2019, my husband went out to get breakfast at a deli across the street from the hospital at Montefiore when, right in front of him at the checkout counter was a stack of the morning Daily News with a huge front-page article staring back at him entitled “A Large Helping of Happiness: Intestinal Transplant Surgery Allows New York Teen to Have His First Thanksgiving Dinner”. The picture showed a boy named Michael Dotto enjoying a piece of pizza for Thanksgiving with his transplant surgeon and Director of Pediatric Intestinal Transplantation at Manhattan’s Mount Sinai Hospital, Dr. Kishore Iyer.


My husband grabbed the paper and hurried it back for us to read. It was an astonishing article, not just for the incredible and inspiring story of this young man and this phenomenal surgeon, but because it came as such a surprise given what we were told. Back when Kelsey was born, we specifically asked Dr. Cowles at Yale about an intestinal transplant. I mean, she was so perfect in every other way. But he told us transplantation should be avoided and is only a last resort because it was basically a death sentence with only at 30% survival rate. For that reason, he pushed us to the STEP procedure, and, in that way, transplant was not something that we dared consider. But all that didn’t seem to matter at that point. My husband and I agreed that all that mattered is that we reach out to Dr. Iyer as soon as humanly possible.
 
That next week my husband reached out to him by email and summarized Kelsey’s case. Dr. Iyer was quick to respond, saying that at least by description it certainly appeared as if Kelsey was proper candidate for intestinal transplant and asked us to bring her in for an extensive day-long evaluation right after the holiday in the New Year. Then Christmas came, and of course, we found ourselves in the hospital again with another line infection. Once we updated Dr. Iyer, he requested we bring her in immediately in the new year. 
 
Once past the latest line infection, and with the new year behind us, we were off to Mount Sinai. There, in addition to another full day of testing and careful examination by the team, we met with Dr. Iyer and his transplant colleague Dr. Jang Moon along with the entire transplant team. Both lead doctors agreed that there was no question Kelsey needed an intestinal transplant and listed her that very day. The one concerning find on examination was that Kelsey had developed a terribly distended belly, the cause of which remained unclear at the time. But Dr. Iyer felt very strongly that at the very least while we awaited transplant it would be inhumane to not do something about her distended belly for which he said he would be bringing her back in. With a mix of both enthusiasm and fear, my husband and I drove home with Kelsey and began the wait, and a wait it was.
 
In the meantime, to make Kelsey more comfortable and relieve the distension, Dr. Iyer brought her back in to do what was called a “narrowing procedure”, removing some of the massively distended and non-functional bowel with the belief that even if it didn’t help Kelsey’s absorption, it would at least provide her more comfort and hopefully less line infections while we waited. So, in. March 2020 at the height of the COVID pandemic, Kelsey had the holdover procedure done. After the procedure Dr. Iyer believed she had enough length in her bowel, but was unsure of the function. Over the next several weeks, it became clear that Kelsey simply didn’t have much motility or function in the small amount of bowel she had left. 


As days turned into weeks and weeks turned into months, time went by as we waited. Kelsey’s 3rd birthday came and went. While she did manage to grow nicely and it seemed for a time that the long hospital stays were behind us, the harsh reality was that she was now completely dependent on TPN for 100% of her caloric needs and she simply did not eat other than a few nibbles of things from time to time just for the exercise of it. Even if she were to, there was no caloric benefit. We still tried to feed her whatever she could tolerate, it was more just to keep her used to chewing and swallowing small amounts of food. 
 
Then came the summer of 2021. To this day I cannot fathom why I started to feel that the transplant surgery was imminent, but I did. Maybe it’s a mother’s natural sixth sense about a child. Maybe it was a godsend. But whatever the reason, I began almost planning for the transplant to come in October. Again, I cannot explain, but October was the perfect time because Kelsey was getting older which improves the surgical prognosis plus, I preferred Kelsey to not be in the hospital over the summer and I had visions of her starting school with her peers in the fall. In addition to my planning, I lent fait a hand with my prayers. I thought how serendipitous would it be if we returned home with Kelsey’s “new belly” in time for Thanksgiving, exactly 2 years to the day my husband brought home that fabled article.
 
Then 2:30am on Thursday October 7, 2021, my husband received the call that a donor intestine had been located in Tennessee. He woke me immediately with the startling news that a little boy passed away from a traumatic brain injury after a fall, and the parents made the brave decision to donate his organs. I was overwhelmed with an entire mix of emotion from unbridled excitement over what we had been waiting this entire time for, to a deep sense of sadness over the passing of this little boy we would never know, to almost paralytic fear for Kelsey. But off we went. I scooped up Kelsey, and we were on our way to the hospital…
 
It was a long surgery. I remember my husband and I walking across the street from the hospital and sitting on a bench in Central Park trying to stay calm as we waited and waited. I recall it was a very sunny day, and that helped to comfort us and lift our spirits. My husband and I remained hand-in-hand drawing strength from one another and beaming hopeful positive vibes to the heavens. After nearly a dozen grueling hours, we got the call the Kelsey’s surgery was complete.
 
The surgery was complete, but not without operating room drama. Kelsey made it out of surgery and was in the PICU but, as Dr. Iyer would explain to us, Kelsey’s ordeal was not done yet. It seemed that once the donated intestine was put into position in Kelsey’s belly and her blood supply attached, a portion of the intestine was not springing back to life pink in color, as the other areas. It was a substantial segment of bowel that remained darker in color. Evidently leaving unperfused tissue in a recipient’s body can be a death sentence. Dr. Iyer had literally about 90 seconds to make a decision as to whether to abort the procedure, lose the organ, and leave Kelsey again not only back on 100% TPN, but also now with an ostomy bag hanging from her little mid-section. His decision was to take the risk of giving the organ a 12-hour “chance”. So, they left the organ in place, only partially closing her belly, and keeping her very sedated, ready to rush back to the OR to save her life. The idea was that, if she was stable for that time and made it to morning, she would return to the OR so they can re-inspect the organ and blood supply and finish the surgery one way or the other. That night may have been the night of our hardest prayers.


October 8, 2021 was a Friday morning and she made it through the night. Dr. Iyer brought Kelsey back in to open her up again, see the results, and complete the procedure. The result was immaculate. Kelsey made it out of surgery around 12:30pm. Dr. Iyer described the segment of concern as being pink and very well perfused, just like all the other areas of bowel. The decision to hold to the course was right and the transplant a success, marking Kelsey’s first major victory in this long battle! Next up was getting her extubated (getting her off the breathing machine) and waking her up from the deep sedation. Apparently, this process can be very tricky especially in a child so small on such deep sedation. Kelsey kept prematurely “breaking through” the sedation, waking up and fighting to move. But the doctors were not confident she could breathe on her own. They explained to me that they needed her ventilator oxygen dependence to drop another 10% and her fluid retention to decrease in order for her to breathe on her own. It was so awful to watch because when the sedation would wear off, she would panic and try and scream in silence seeing and feeling a tube down her throat and into her lungs breathing for her. They assured me she was safe on the ventilator and would not remember any of it. Even so, her tears would roll down her cheeks making it even more painful to witness as I stood by helpless.
 
As the hours turned, I never left Kelsey’s side, holding her hands, stroking her arms and legs, and talking and singing to her to comfort her as best I could. Finally on the morning of October 10, 2021, she was successfully extubated and breathing on her own. It was such a relief to see her off the ventilator, but quite a shock to Kelsey to awake from the ordeal and find a tube coming out of each side of her belly there to drain post-surgical fluid collections and excess blood from her abdominal cavity, a draining tube coming from her nose to decompress the bowel, three different IV access points in her arms, and a blood pressure cuff on her leg. Now would begin the work to get her new donor bowel to start functioning. For the time being, she was placed back on full TPN while they began the process of weaning her off and changing her over to all G-tube feedings in addition to whatever we could get her to eat. In the meantime, the team worked to balance her immunosuppression medications to fight rejection, using a drug called Prograf® while keeping her healthy and free of infection.


In the days that followed Kelsey was so uncomfortable as I stayed and slept in a chair by her side. Then one morning at 2am, Kelsey called out, “Mommy, I need you!” She had not only one, but two bowel movements, signaling that her intestines had sprung to life. It was another major victory. Her condition would really start to improve from there as they ramped up her G-tube feeds and ratcheted down the TPN. We were off and running!
 
While they were moving to shift most of her calories from TPN to G-tube feeds, I began literally teaching Kelsey to eat. It sounds so strange to imagine a child of three needing to learn how to chew and move food around their mouth with their tongue, but such was Kelsey’s situation. With a great deal of work, she started catching on. It was so incredible to me to see her finally eating real foods like yogurt, watermelon, banana, apple juice, Rice Krispies, Chex, and pretzels.


 
It’s worth pointing out that during this convalescence, the road was by no means smooth. Kelsey lost a large amount of blood in her stool from an artery at one of the intestinal connection sites, for which they had to correct endoscopically. For this she required multiple transfusions. The fact that this was able to be corrected endoscopically and was not something unexpected was our third major victory. There was also the issue of her leaking blood nutrients into her belly cavity, causing the two drains in her sides to remain for an extended period until the leaks stopped. Kelsey also developed an infection with a virus called “adenovirus” resulting in loose and frequent stools. This entire time her Prograf® level was bouncing all over the place and had to be monitored and adjusted on a day-to-day basis until her dose was finalized. During those times it was tough to get her out of bed. Her legs were weak, and she could not even stand and support herself on her little legs without some assistant. But fight to try she did. On November 7, 2021, her last drain was removed and her Prograf® had stabilized, and four days later she was fully off TPN. Finally on November 18, 2021, after 42 days in the hospital, Kelsey was ready for discharge—a fourth milestone victory!


This next year will be critical for Kelsey as her new organ continues to adapt. We were told that the one-year mark is a very significant milestone for intestinal transplant recipients, after which, if patients make it to that point, their prognosis improves exponentially. We were cautioned that there will be a lot of work in the year ahead and that it may seem a bit like a roller coaster, with plenty of ups and downs. But from all we’ve endured so far, we hardly expected any different. We are ready for the challenge. Our entire family and remarkable circle of friends are strong, brave, and fiercely determined to live up to those same qualities which Kelsey personifies for all of us.

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Tricia McRedmond Colker
Organizer
Darien, CT

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