It was the best of times, it was the worst of times… it was the season of Light, it was the season of Darkness, it was the spring of hope, it was the winter of despair…
These are some of the opening lines of Charles Dickens’ classic novel, A Tale of Two Cities. They capture the not infrequent juxtaposition of very good things and very bad things in our lives, without giving either more weight than the other. It reminds me to hold the two in balance – and allow myself to feel and know the bitter sweet reality of life between the first and second coming of Jesus Christ.
Case in point, we have recently had two babies who required intensive care in our hospital; one has done very well, and one did not do well. The first baby is named Estephanie, and the majority of her medical care was provided at the direction of Drs Anne and Isaac Hotz. This is also the infant that I previously mentioned for whom Bethany has supplied breast milk. She was born premature. And while that may not seem like a big deal – it is.
Imagine being in a rocket ship, and telling ground control that “All systems are not go for launch, repeat, multiple critical life-sustaining systems are not functioning.” Only to hear, “We are go for take off.”
Premature delivery shares a similar level of disaster potential as the above scenario. Our lungs, skin, eyes, brain, gut, and fat reserves, are all essential systems that don’t come fully on board till late in a pregnancy. And being born without anyone of these systems can result in a cascade failure reminiscent of Apollo 13.
With Estephanie, we knew from her mom’s first prenatal visit that she was at risk for early delivery, because Estephanie was sharing the uterus with a birth control device called an IUD.
Anyways, with advance notice that the baby might be born premature we were able to give the mom timed steroids to rush the baby’s lung development. We do this whenever we suspect preterm delivery because once a mom’s body goes into true labor, there is precious little that doctors can due to stop the process (especially in rural Honduras).
Ultimately, Estephanie was born at 29 weeks and 3 days of gestational age. At that stage of developmental, with our resources, it was a Herculean task to keep baby nourished, breathing, and avoid sepsis. Remember the brain and fat reserves that aren’t fully developed yet? That means that most premature babies don’t have the coordination or energy to consistently breath or eat independently. So we place a tube down the mouth to allow us to put food directly into the baby’s stomach, and a CPAP over their noses to augment and remind them to keep breathing
But tasks such as feeding, breathing, and keeping baby warm are easy compared to the biggest hurdle that Estephanie faced. About a week after birth, when the basic problems inherent in preemies began to seem surmountable, Estephanie suddenly started showing signs of sepsis or an abdominal emergency called neonatal necrotizing enterocolitis (nicknamed nec). The only known preventative medicine: breast milk (having had Bethany’s milk may be one the reason this baby went on to survive).
The treatment for Nec: no feeding, support the baby, try antibiotics, and wait. The treatment for sepsis: remove any possible sources of infection, give antibiotics, support the baby, and hope. In the case of Nec, if you have to wait more than a day or two you need to order a custom tailored formula called TPN that can be put directly into the baby’s blood stream (bypassing the gut completely which could rapidly necrose and kill the baby if food is put through it). This must be given through a central line (like an IV, but going through a major vessel dumping directly into the heart).
In the case of sepsis, any central line that you have in place is a potential source of infection. So we pulled the old line, ordered the TPN, and tried to put in a new central line. “Tried” being the operative word. Over two days, we tried every possible access point, multiple times, for hours at a time. We prayed, we dripped sweat, we got frustrated with each other, frustrated with ourselves, frustrated at having ordered and transported the expensive TPN from the across the country only to be unable to deliver it the final few inches.
Ultimately, we were unable to get a central line. Without a central line we had to decide when we would allow the baby to have tube feeds- the sooner we fed her, the higher the risk of complications from nec, the longer we waited, the higher the risk of complications from starvation. In the end because baby made a quick turnaround soon after we stopped feeding her we were able to compromise between the two ideal intervals and resume feeds after 48 hours We started slow and praise be to God, Estephanie was able to tolerate tube feeds.
Today, by the grace of God, Estephanie is doing well. She’s coming up on 36 weeks gestational age, and has been discharged from the hospital after almost 50 days. She is no longer needing help breathing and she is able to take a bottle. She is the youngest preemie to have survived at our hospital. Praise be to God.
Our second baby, would have been named Genesis. She was brought in late one evening when I was on call. I was already in the emergency room, monitoring a young boy I had just medicated for an ongoing seizure. I looked up to see a mother being shown in to our ER with a silent bundle in her arms. Typically I let out nurses locate a patient’s chart, get initial vitals, and ask basic questions, but something in this mother’s defeated demeanor prompted me to make the initial evaluation.
I quickly, explained to the parents of the boy with a recent seizure how to monitor their now sleeping son, and crossed the room. The baby’s mom seemed reticent to put her baby down, and when she did I saw a frail, pale, recently born baby girl who appeared dead. She was floppy and unresponsive as she laid in the bed, and I thought she might be dead. But on further evaluation she was taking shallow breaths had a weak pulse.
I urgently called for 2 other doctors to help, and tried to obtain vital signs and figure out what had happened.
The baby’s diaper was full of black and coagulated blood, and her mom said that her baby was 8 days old and had been doing well until she suddenly began vomiting and stooling blood that morning. Immediately her mother started trying to get her baby daughter to the hospital. (She does not own a vehicle or know how to drive, almost all taxis and public transport are not allowed to operate due to COVID, and road blocks are set up all throughout the country to decrease the spread of COVID)- so it took most of the day to get her baby to us.
When my colleagues arrived, and verified that the baby was still alive despite appearances we had enough information to determine that we had a baby on the brink of bleeding to death- who we might be able to save. We called ‘CQ Belfate – Rapid Response to the ER’ over the radio – signaling all available clinical staff to come in and help.
As help came pouring in, we inserted a needle into the baby’s leg bone to begin giving fluids and as soon as our lab personnel arrived we drew off some of her precious remaining blood to check her blood type. More than anything else, the baby needed blood, we later estimated that she had bled out three quarters of her blood volume, prior to arrival.
As we were waiting on blood typing, we gave the maximum amount of IV fluid, continued to give oxygen, and, as it seemed likely she was still bleeding internally with an undetectably low blood pressure, we decided to try for a central line (medicines that force the heart to increase blood pressure are called pressors and must be given through a central line).
This was only about a week after our failure to get a line on Estephanie. But miraculously, Dr. Isaac managed to get a blind subclavian line in with one of his first tries. The baby and her uncle were a blood type match so we drew a unit of whole blood from him and started giving the baby 4 teaspoon boluses of blood at a time.
Honestly, we were all a little shocked that she survived that first few hours, and not only did she survive, she awoke to start fussing and kicking soon after her transfusion! Nevertheless, that night I explained to her mother that Genesis was not yet out of the woods, and that if she did survive it would be a miracle from God.
On days 1 and 2, we continued to be amazed at Genesis’ resilience, and started to hope that God might heal her. After her first transfusion, we gave her her first vitamin k shot. We became more and more convinced that Genesis had gastrointestinal bleeding due to at least a vitamin k defeciency (pretty much all babies are born with some degree of vitamin k defeciency).
Unfortunately, Genesis had been born on the way to our hospital rather than in our hospital. As she was born precipitously in the vehicle before arrival and their family had no money to spare, they turned around and went home, never recieving the vitamin k shot.
The next morning showed that although Genesis’ brain, heart and lungs had bounced back remarkably well, her liver and kidneys were not so quick to bounce back. Those organs showed signs of severe shock and only time would tell if they would recover quick enough to allow her to live.
On day 3, Genesis had completely stopped bleeding into her belly, and her liver seemed to be making a slow recovery, but her blood pressure and oxygen were wavering and she still had not made any urine. Her mother was exhausted from staying by her baby’s side, and afraid to hold her daughter with all the tubes, lines, and devices we had afixed to monitor and respond as needed. At one point, while my colleagues and I were discussing her poor prognosis and worsening situation, baby Genesis had several very low blood pressure and oxygen saturations, her belly was swelling ominously, and I along with Dr. Isaac and Dr. Anne decided to prioritize allowing mom to comfortably hold and love on her baby who seemed to be dying.
We explained to the mom what we felt was inevitable and she was agreeable to not prolong her baby’s suffering. With heavy hearts we disconnected several lines and took off the blood pressure cuffs and pulse oximeter. We were able to comfortably put Genesis in her mom’s arms. Mom asked that we discontinue the oxygen-CPAP so she could just hold her baby and see her beautiful face. I prayed with mom while holding mom’s arms as she cried and gently rubbed Genesis’ head with my other hand. I prayed for God to be with us and baby Genesis. I prayed and cried, I had several words of comfort and hope I wanted to offer, but those words wouldn’t come out. So I swallowed down a sob and simply concluded, “Help us Lord, Amen.” And then waited in silence for a time with mom and Genesis.
But, about one hour after we moved to what we call comfort care (stopping everything that doesn’t make baby more comfortable including oxygen, fluid, and pressors), Baby Genesis went from gray back to pink, from struggling to breathe back to breathing comfortably, and started becoming more active. Genesis really liked being in her mom’s arms!
With such an improvement we talked with mom about keeping the priority of her holding her baby but at least giving some fluids and oxygen to keep Genesis confortable. Mom agreed and Genesis did much better over that night. But still Genesis did not urinate.
I remember coming home that evening to find Ruthie running around with a diaper so wet that it was sagging under its own weight. As I changed that diaper I thanked God that my babies make lots of wet diapers.
The next day I didn’t know what to do. Should I continue to pursue the goal of comfort care, or should I revert to full active treatment? I prayed for wisdom, but didn’t feel like I received any. Ultimately we felt we owed it to this baby who kept hanging in there to give her every chance to survive. Even though she still hadn’t urinated, we were approaching the limit for how long a newborn can survive without nutrition.
She agreed (with some relief), so we again needed TPN (baby probably had a gastric ulcer and was uninterested in eating). TPN takes time to custom formulate and ship, so we had to order it ASAP that morning. After ordering it we needed to change out our central line to prevent sepsis. Given our recent frustrations, Dr. Isaac and I decided to use a process that uses a guide wire to hold the old line’s position while the old line is removed and a new one is placed. In the midst of this procedure the guide wire slipped out of position because it wasn’t quiet long enough.
But mom was in favor of comfort care, mainly because she was concerned that her family would already be unable to pay for what the hospital had already done. (This is a sensitive cultural intersect- in the developed West we are blind to the cost of our healthcare, and never speak about money as part of developing a care plan, in Honduras people want to know how much a life saving surgery will be before they are rolled back). Trying to compromise between the two worldviews, we asked mom to give us one more day to give Genesis every possible chance and we promised to work with her to bring the cost of the hospitalization down to something she could afford. (Our prices are set to be manageable by most Hondurans, keep our lights on, and pay our Honduran staff – for instance a 24 hour hospital admission costs about 20 dollars.)
We were crushed, literally I felt God-forsaken. Once again we had TPN ordered and we’d lost access. We tried briefly to get another line in but in a baby who could not easily stop bleeding who already had a very low chance of survival, we did not feel it was safe or right to keep sticking her.
When I explained the situation to the mother she was incredibly gracious. Her response more than anything else that day assured that we were not forsaken by God. He was right there. In the mother who bore the roller coaster of her infant’s hospitalization with dignity and grace. Even though this was her second child and her first had died mysteriously a few days after birth; she was kind and appreciative of all our efforts, thanking us and praying with us. Shortly after, she asked us to discharge Genesis so she could take her home to die.
The day after Genesis’ mom returned to our hospital to tell us that Génesis had died and to start making payments, we celebrated the discharge of Estephanie to her home, in good health.
It was the best of times, it was the worst of times..
Grace & Peace,