Team Max Part One

When I was in my initial yoga teacher training, I had to evaluate and write about trauma and life. While wanting to share Max’s story, I did not want my son to be known as one of my life traumas and HE as a human being is not. The experience of bringing a newborn with unexplained medical complications into this world, that's where the trauma starts. So I sat down in 2023 and I wrote. I wrote every single detail about our story with Max. It is raw, it is uncensored and it is real. Anytime we read it, we cry and reflect. The timeline does move around a bit as the early days were confusing, full of new information and had us bouncing all over the place.

I have never shared Max’s story in its entirety. Until now.

When I was pregnant with Maxwell, his anatomy scan ultrasound was a little over halfway to his suspected due date; it was the winter. We learned that all the pieces and parts of our gender unknown baby were in working order, everything looked the way it was supposed to. This is supposed to be the green light for a Mama knowing that growth is on the right track. Brain, spinal cord, heart, lungs, all the necessities are in place. All systems go.

And then you have a child like Maxwell.

Maxwell Charles Nadeau was born June 22, 2016, when I was 37 weeks pregnant to the day. He was born via c-section (after thirty something hours of un-productive pushing) and was 8lbs, 13oz with the biggest head on any baby that I have ever seen. When he was removed from his womb, the doctor said, “Oh Melissa, he was never coming out the natural way…that is one big head”.

I had gestational diabetes during my pregnancy and Max was born with blood sugar abnormalities that required observation and care in the NICU. Max was also jaundiced and needed to be exposed to light therapy. At discharge, one of Max’s ears did not “pass” the hearing screening and we were asked to come back in a few days for a re-check. Every nurse was convinced this chunk of a newborn had too much fluid in his ears to “pass” the hearing test. The re-check provided the same result.

At four days old, we took Max to the pediatrician, and the Dr. assures us that there is likely a fluid build-up in his ears from birth and it will resolve…when it does, his hearing will be fine. So far, at this point, I have had multiple medical professionals explain that because Max was born via c-section and not vaginally, the fluid was not properly released from his ears. With the fluid issue not resolved, we were referred to CCMC ear, nose, and throat (this portion resumes later) for an evaluation.

Max struggled to eat. Often, feeding was accompanied with projectile spit up. To combat this, I immediately eliminated diary from my diet, and we tried all the little tips and tricks we learned with Carly, assuming this could be reflux related. However, there came a time when the amount and frequency of Maxwell “spitting up” became abnormal. You can imagine this was not a peaceful time for anyone.

At twenty-eight days old, Max was emergently hospitalized for not being able to keep any liquids down. The Dr’s were concerned he may have a stomach condition getting in the way of him eating. The ultrasound was clear; however, his breathing was not. He was admitted for an “upper respiratory infection”. Max’s breathing was still being attributed to fluid and being a newborn. I remember being “taught” different tips and methods of breastfeeding as if that somehow had to do with his inability to digest.

On a random weeknight, my father was at the hospital visiting with us. He was holding Max, and I remember feeling physically uncomfortable. I could not figure out why, but I had this nagging pain in my chest. I was sitting next to my father talking about Max when I suddenly could not catch my breath. I rang the bell for a nurse; the look on my dad’s face was alarming. I knew something was wrong.

The next thing I remember was being rushed down to the children’s emergency room, instructing my dad to stay with Max. Surrounded by people highly trained in pediatrics, they are putting oxygen on me and starting an EKG, everyone, including myself believes this is a cardiac emergency. While the EKG looked surprisingly stable, my heart rate remained high, and I was in quite a bit of pain. This required transport to Hartford Hospital across the parking lot, however, I was taken on the creepiest, most frightening stretcher ride of my life…through an underground tunnel over to Hartford Hospital for further investigation. All tests pointed to a problem with my liver. My enzymes were so high that the attending physician said, “I legally cannot let you go”. The pain I was feeling in my abdomen that was radiating to my chest was unbearable. Having a history of pre-eclampsia with Carly, they admitted me to a floor where I could be assessed in greater detail and monitored.

But what about Max?

Ian is in Hartford at this point and Carly is with my in-laws. My father is relieved that I am not having a heart attack, however, the doctors are not sure why my liver enzymes are what they are, and they are insistent on an MRI. The MRI machine is booked solid. I am one-month post-partum, pumping breast milk around the clock and dumping what is poisoned with pain medicine, Ian picking up what Maxwell needs. He brings the kids to see me; each time they leave I am a mess of tears. I felt alone. I felt abandoned. I was confused, frustrated, and felt pushed to the side. I know my mom came to see me, but all I remember is her sitting in a chair playing a game on her phone. I questioned if I was strong enough to get through this. Maybe the kids are better off without me?

Five days, more than one massive anxiety attack, and one MRI at 3 am later, I learn that I have the beginning stages of gallstones and will likely need my gallbladder removed. With hydration, meds, rest, and negative protein tests, I am discharged home to my family pending scheduled surgery.

The next few months are wild. Max cries at a pitch neither of us have ever heard – it is loud, deliberate, and intense. The spit up was insane and this child HATED the pacifier.

The day came for our evaluation at Children’s ENT department. We are told that it seems as if Max has hearing difficulties because of fluid (again with the fluid!). He is scheduled for ear tube surgery as soon as possible. The doctor tells us the inside of Max’s ears are full of this thick, mud-like fluid that needs to come out. That “SHOULD” correct the hearing loss they told us. The nurse, Rebecca, I will never forget. I asked her “so, when do we talk to someone about what happens if Max is deaf?”

“You’ll have to wait and talk to the doctor about that after the ear tube placement” was her answer and out of the room she went.

Hang on. Is my kid deaf or not? Do we have a deaf child? Didn’t you see him twitch when you shut the door the way you did? I swear he jumped a little when I dropped that pan on the floor of the kitchen. How in the hell are we going to learn sign language?

Max’s hearing loss qualified him for “birth to three” in- home therapeutic services and part of his assessment included checking for mobility concerns by a physical therapist. During the evaluation, she (the physical therapist who would later change our lives) noted a teeny, tiny, barely could you see it dimple at the base of Maxwell’s spine right above the crack of his bum. I strongly recommend that you not ever google “sacral or spinal dimple” because the articles, photos and information is scary as hell.

WHAT THE FUCK IS A TETHERED SPINAL CORD???

I mean we know what spina bifida is, but how? How could we have a baby that is six months old now and not know this? Wouldn’t they see this in that anatomy scan we went to? I was 38 years old, they watched this pregnancy so closely, what happened?

Just to be clear this ^ does not happen to me anymore. I don’t allow myself those spirals.

When I made the appointment at the pediatrician the receptionist said, “did you say sacral dimple?”  Looking at the note from the physical therapist, and confirming I spoke correctly, I hesitantly replied in the affirmative.

This same confusion was relayed to me by the pediatrician during the appointment as well. “Sacral dimple?! What?? Oh, he does not have THAT!” She spent a lot of time reassuring or trying to convince me that Max did not have a sacral dimple, and this was nothing, however, to be extra sure, she ordered an ultrasound.

The radiology people called to tell me that a six-month-old did not qualify for an ultrasound and an MRI would be diagnostically appropriate. The back and forth with the pediatrician about this is ultimately why we left that office. Too many loose ends not tied together by the one office who should be performing that specific task.

At one time, the pediatrician and I discussed these brown swirls I noticed becoming more pronounced on Max’s body. The same “it’s nothing” Dr. was not concerned with Max’s spots, and at one point tried to rub them off his skin with an alcohol pad questioning if the color of his outfit was seeping onto his skin. Shortly after this, Carly, just over two years old, was presenting with a turned eye and we were sent to a children’s ophthalmologist. While there, I asked the Dr. to look at Max’s eyes because another little thing I noticed was that it appeared as if his pupils were not entirely closed. The eye doctor examined Max right then and there, diagnosing him with bi-lateral iris colobomas. At this point, the eye doctor does some fancy footwork to determine if the coloboma reaches Max’s retina. If that’s the case, Maxwell could go blind; this was not the case.

The status of his vision as he grew would be unknown, however, the Dr. was confident Max should be followed very closely. Not only did the doctor address my concern for Max’s eye formation immediately, but he also recommended specifically mentioned which pediatric dermatologist we should see for the swirls that he noticed. In the dark exam room. He educated me, saying that children with iris colobomas tend to have underlying genetic reasons for them and we should consider seeing genetics.

In a pre-pandemic world, we were able to get Max a dermatology appointment relatively quickly. At this appointment we learn that Max has what is called “linear and whorled nevoid hypermelanosis” that follow the “lines of blashko”. This means that somewhere in the development process, Max’s skin swirled affected cells with non-affected cells.

At seven months old, Maxwell is at the top of the genetics appointment waiting list and has a team forming: a pediatrician, dermatologist, audiologist, ENT, and ophthalmologist. I thought this was a lot. The irony of the eye doctor’s findings is not lost on me. Through Max’s eyes, he literally saw a layer of him we were not privy to. Without his compassion, time, and patience, I don’t know how long it would have taken to start discovering these mysteries.

When Max had his ear tube placement surgery, the audiology team wanted to hearing test him while he was asleep. Max was very fussy, wiggly, and refused to settle so much so that hearing tests were incredibly difficult. The ENT asks to speak to us in a closet of a room and right after she said “surgery went well” we learn that Max has a severe hearing impairment. They told us that his test results revealed a severe to profound loss in his right ear and his left ear was profound loss to deaf.  The bone conduction test they performed told the story of a complicated hearing loss. We had no idea how complicated it would be.

We eventually get our genetics appointment, and the geneticist believes Maxwell could have CHARGE syndrome and tests him for a variety of gene abnormalities. CHARGE is a syndrome that results in colobomas of the eyes, heart defects, a blocked or abnormal airway through the nose, small genitals, short in stature, with reproductive concerns as well.

We have a toddler and a preschooler at home. We both work full-time. We spend an obnoxious amount of time in the “dark”. We have no idea what to do or what to read. How to plan, how to wait, we know nothing. I am a mess. Every single day I have to pretend this is not the biggest concern in front of me. Every day I have to act as if this is all going to be ok when I feel in my gut that something is wrong. Something is very wrong. On top of this and the “typical” chaos that accompanies any newborn, I am also drowning in stress at work. I am working evenings and facing an incredibly large hurdle with pumping breast milk at work (This section of the story will be published soon). Ian and I work opposite each other, and we are struggling with securing babysitting that we can be comfortable with.

After a few excruciatingly painful weeks of waiting for the genetic tests to come back, we learn they found nothing. Big, fat, zero. Though, there is a question of a genetic component to Max’s hearing loss, this will require further testing. The next step is to send his genetic sample off for further testing and to submit samples from Ian and I. We know Maxwell most likely does not have CHARGE; however, we are referred to urology, and cardiology to be sure all the parts are in working order.

We have an appointment at CCMC cardiology. I have no idea how to balance all the things that I am. I am taking a sick day the second I earn one at work, a hostage to the number of appointments...in less than eight months I have been to more doctors than I had for most of my adult life. I am also in the midst of uncovering that I am being discriminated against at work.

That sacral dimple we discovered a while back? Because of it, we are referred to neurosurgery. This is where we meet one of the kindest, smartest, and most compassionate doctors I have ever met, the head of neurosurgery, who explains to us that Maxwell presents as if he might have a tethered spinal cord. Treading lightly, the doctor lets us know that Maxwell will need an MRI under anesthesia. Babies this little cannot hold still anywhere near as long as they need to for this imaging.  In addition to the MRI, the dr. wanted Max’s kidneys and bladder looked at via ultrasound. Sometimes the presentation of these organs can tell a doctor what they need to know. That evening, neurosurgery called to tell me that while Max’s ultrasound looked ok, he had some organ abnormalities that would require further investigation.

At this point, I have been told that Max did not expel the fluid in his head or lungs the way he was supposed to. That he did not present the way a typical CHARGE child does, that he did not present the way a typical deaf child does. He has a sacral dimple that looks suspicious, but it’s not as clearly defined as it is in some other kids. He has abnormal kidneys and abnormal bladder, neither of which were detected before the imaging. Every single step of the way and let me remind you we are only seven months into this shit show, has been another monumental hurdle.

This is where the timeline gets messy because survival mode is just that…a mess. Ian committed to a pond hockey tournament in Vermont and given the massive amount of stress we were under, asked me to consider going with him for two days.  When we arrive back home from ONLY two days, two days…I could hear Max wheezing from the driveway. In a matter of days, he became incredibly ill. To be fair, to the average person he presented with bronchitis or a bad cold. I did not unpack. I dropped my bags and took him to CCMC emergency room. I could see how hard he was working to breathe, and this is one of the first times I am terrified that I might lose him. As I was crossing the bridge into the city, I started to worry about where to park my car. It was snowing!  Where do I park and get into the emergency room? In Hollywood fashion, I gave my car to a security guard while I ran inside with Max. In the emergency room, multiple nurses helped secure my baby while they suctioned him. I could not believe this was my life.

I am going to add this part in because although it stings like hell, it’s an important part of the story. From the emergency room, I learned Max was going to be admitted and I called my father. I asked him to go from Ellington to East Hartford and grab some essentials for me and Max since Ian is home with Carly. My dad seems to struggle with the answer but tells me he is sorry; he can’t help because of the snow. He needs to shovel the driveway before my mother comes home from work, otherwise she might not be able to get her all-wheel drive Subaru up the driveway.

Ugh.

At this point, I can barely speak. I cannot stop blaming myself for being away. I cannot stop thinking that if I was home, I would have figured all of this out sooner. If I hadn’t left, if I had facetimed instead of checked in via text, if we left sooner and avoided the snow…etc.

We learn that Max is going to have a swallow test because the doctors are concerned he could be aspirating when he eats. What does this mean? The theory is that when Max is swallowing milk, it is not traveling down his esophagus into his stomach, they believe liquid is making its way to his lungs.

The team of specialists perform the swallow test (called a modified barium swallow) by strapping Max into what resembles an electric chair. Immediately, they show us through the very high-tech x-ray that Maxwell is not swallowing correctly. He is most definitely aspirating when he drinks, which is why he has been having recurring breathing problems since he was born. Little drops of liquid are infiltrating his lungs, resulting in his lungs always operating in super defense mode and creating secretions for protection, making breathing difficult and making him rather sick.

The disinterest in the pacifier, the massive amout of spit up, the difficulties eating, the eight month breathing struggle....

Stay tuned for part two...