In my previous writings of Max’s story, the timeline unfolded in chronological order, which is really a lot to digest and follow along with. Reading it confused me, and I experienced it! I have revised parts one, two, and three of Max’s story, covering eight years in three parts. (February 2025)

Maxwell Charles was born June 22, 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/we 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. assured us that there was likely a fluid build-up in his ears from birth and it should 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 in the timeline the pediatrician expected, we were referred to CCMC otolaryngology (ear, nose, and throat/ENT) for an evaluation.

The next few months are wild. Max cries at a pitch neither of us have ever heard – it is loud, deliberate, and intense. He absolutely hated the pacifier. Cry, throw up, scream, throw up, cry, throw up….

The day came for our evaluation at Children’s ENT department. We are told that it seems as if Max has hearing difficulties because 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. No one would talk to me about the “what if it doesn’t?” I asked the nurse, Rebecca, “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. 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 the hell are we going to learn sign language?

When Max had his ear-tube placement surgery, the audiologist wanted to test his hearing while he was asleep under anesthesia. Max was a very fussy, wiggly, and active baby; hearing tests were incredibly difficult. We tried to time them for feeding or nap times. This required me to factor a 30-minute drive into the mix of eating or sleeping (I couldn’t let him fall asleep in the car). Every test, every time, different results. Every single test.

On the day of the tube surgery, the Dr. asks to speak to us in a closet of a room and right after she said, “surgery went well”, we heard our first, “however…”

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 tested at “profound loss to deaf”.  The bone conduction test they performed told the story of a complicated hearing loss.

As of today, Max has been evaluated by the following audiologists: Connecticut Children’s, American School for the Deaf, Boston Children’s, and Solinsky Hearing Center.

Four different sets of audiology teams, four different sets of equipment, four different methods of testing, four different booths, four different locations spanning years and…four different results.

(At some point, it is recommended that we switch to an otolaryngologist who specializes in cochlear implants; if we decide cochlear implants are the way to go for Max, we have an established relationship. For a few months Ian and I would ask any and every provider about deafness & hearing loss, cochlear implants, and sign language. We learn (and not from any of the doctors) that to successfully place cochlear implants, any natural hearing Max has will be eliminated. We believe the decision to mechanically alter Max’s capability to hear is not our decision. We decided that there will not be a discussion about cochlear implants until Max is old enough to understand and participate in the decision).

Max’s hearing loss qualified him for “birth to three” in-home therapeutic services; part of that 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 with your naked eye, dimple at the base of Maxwell’s spine right above the middle of his glutes. Allow me to save you from the trouble. Do not google “sacral dimple”, the photos and information are terrifying. Tethered spinal cord, occult spinal dysraphism, spina bifida…WHAT?!?!?

Cue the “dr. google spiral”. Come on…every single person reading this has done it.

When I made the appointment at the pediatrician, based on the recommendation of our new physical therapist, the receptionist said, “did you say sacral dimple?”  Looking over 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. “Sacral dimple?! What?? Oh, he does not have THAT!” She spent a lot of time “reassuring”, more like trying to convince me that Max did not have a true sacral dimple, and this was nothing. Here it is again, however, to be extra sure, she ordered an ultrasound.

Through the radiology office, we learn that the ordered ultrasound was not “diagnostically appropriate” for Max’s age, and he requires an MRI. Because of all of this, we are referred to neurosurgery. Trembling fingers dialed to schedule the appointment.

We are assigned coincidentally to the head of the neurosurgery department, the dreamiest doctor of all time…. Dr. Martin. When I tell you this man should’ve been on Gray’s Anatomy, I am significantly downplaying.

Dr. Martin is one of the kindest, smartest, and most compassionate doctors I have ever met, who also has the patience of a Saint. He explains to us that Maxwell presents as if he might have a tethered spinal cord. The Dr. agrees that Maxwell requires an MRI, however, it needs to be under anesthesia because babies this age cannot hold still. Also, tethered spinal cord kiddos have a history of bladder and kidney trouble, so an ultrasound is ordered as well.

The evening of the appointment, I was working my job as a 911 dispatcher for the police department when I see the CT Children’s number on my phone…. I was more afraid to answer this call than any 911.

“I don’t see anything scary or emergent, however, Max’s bladder and kidneys do appear different than ‘average’. You guys are going to be referred to a urologist and a nephrologist for further investigation”.

To reduce confusion, we pause neurosurgery here.

At twenty-eight days old Maxwell is emergently hospitalized on a Saturday because he could not keep fluids down. He threw up everything that went in, despite my attempts to strip my diet of all good things to prevent reflux. The pediatrician was concerned he had developed a hernia or stomach emergency. The ultrasound of his belly was clear; however, his lungs were not. He was hospitalized for a serious respiratory illness. He was too new to be this sick. To add to the stress of a hospitalized newborn, my gallbladder went haywire, and I was rushed to the emergency room for chest pain. Leaving my less than one month old with my father on the seventh floor of the children’s hospital while they ran an EKG on me downstairs in the emergency room. Twenty-eight days in.

At eight months old, Max is hospitalized for his breathing again. This is when we learn he might have swallow disorder, the signs are there. A swallow disorder? Ian and I spent countless hours questioning every single little thing. Did I eat blue cheese when I was pregnant? Did I not drink enough water? Eat enough iron? The cycle of blame when you have a sick child without answers is nothing short of brutal. 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.

This is the part of Max’s story where he is literally strapped in with me to what resembles an electric chair. The team of specialists performed the swallow test (called a modified barium swallow), and they immediately show me through the very high-tech x-ray that Maxwell is in face not swallowing correctly. He is most definitely aspirating when he drinks, which is why he has been having recurring breathing problems since birth. Little drops of liquid are infiltrating his lungs and his lungs kick into super defense and attack mode and create secretions for protection, causing asthma and a significant airway compromise.

Max is diagnosed with dysphagia; he has underdeveloped parts of his swallow mechanisms that are causing him to aspirate.  When he swallows liquid, the muscles are not strong enough to bring all the liquid he drinks where it is supposed to go, therefore, we need to learn how to thicken liquids for him so they’re too thick to leak into his lungs.

By now, Maxwell is gathering a team of providers: pediatrician, audiologist, neurosurgeon, ENT, physical therapist, occupational therapist, and we are about to be assigned to a feeding team.

In the hospital room, a feeding specialist came in with a Mary Poppins bag of “things”. She begins to take out gloves, packets of powder I’ve never seen before, a glass measuring cup, a fork, and a handful of syringes. Before she even begins, the tears are slowly and silently leaving my eyes.

We had absolutely no idea how to navigate this new territory we were being forced into. Max was fed breast milk through a bottle. The instructions for him included a prescription thickening agent to be whisked into every single liquid he ingests. Those liquids include water, formula or milk and juice. All liquids. To thicken his liquids, the liquid must be at room temperature. How am I going to keep up with pumping and thickening and working and another two children?

I am absolutely overwhelmed and FURIOUS.

I am not angry with God or the Universe; I am not angry with the cards we have been dealt. I am angry that every step of this eight-month journey has been an uphill climb, and with every appointment and hospitalization the hill is getting bigger and bigger. I fucking hated hearing, “however”. Sometimes the tears were impossible to hide. I broke down in many hospital and exam rooms, allowing myself sixty seconds of feeling before jumping back in as care giver.

The only pharmacy that carried the prescription thickener…Walgreens in Hartford across from the rear entrance to Hartford Hospital. Convenient? No freaking way and in a pre-covid world, there were no shipping or curbside pickup options available.  To a Pyrex measuring cup add Max’s room temperature liquid, whisk in a packet or two or three of the thickening agent and use syringes to test the thickness. Set a timer on your phone and test the liquid. (See a video of prep here). You cannot deviate from any of the products and directions given in the hospital. Run out of syringes because the numbers wear off from hand washing? Drive to Farmington for more.

If the liquid is not right, dump it out and try again. Keep in mind you need to do this before Max eats and time it perfectly because the liquid will be too thick if it sits at room temperature, and you’ll want to work on it before he gets upset. An eight-month-old is still VERY cranky when he is hungry. No pressure though. We now have a GI provider and a pulmonologist as we have been assigned to the “aerodigestive” team. This new program at CCMC was offered to us in an attempt to streamline providers for families, seeing multiple people in one visit.

We went once. Having a baby see four providers in one day was too much for him. Driving multiple times, a week was too much for me; we had to meet in the middle.

At this time, Max’s care was becoming more than a full-time job. Weekly, in-person check-ins with feeding therapy (either in Farmington, Glastonbury, or Hartford), routine audiology exams that were timed with Max’s naps, occupational therapy at home, speech therapy and physical therapy at home. Carly is a full time at home toddler and Ian, and I are both trying to maintain full time jobs. No parent should ever be placed in the positions we were in. We were forced to work to afford the insurance and care for our son and yet our son required more care than we knew how to provide.

We did not have a diagnosis that gifted us access to a world of resources. We received a different diagnosis for a different body part each time we went to the hospital. In my imagination, I thought a social worker would reach out to us and help us coordinate all these providers and appointments. We had a child that required more than average care, but he was not emergently sick or requiring palliative care.

How did we get through it? I do not even know.  Seriously, looking back, I can see the depth of survival mode we operated in. Holding our breath until every check clears the bank, sleeping through the night only when test results were finally returned. Filtering through massive amounts of bullshit from work because I am “that mom with that kid who is always taking time off”. My co-workers were full of, “Oh! Look who decided to come back today” back then.

Every single day brought with it more challenges.

I’m pretty sure that now we are progressing towards the nine-month stage. While “most” baby boys are growing towards toddler age, their testicles drop into their anatomically correct position. However, Maxwell’s did not. At this appointment we learn that Maxwell has an “orchiopexy” which is an undescended testicle. If left untouched, it could cause significant ramifications he will be forced to deal with as an adult.

Because Maxwell is less than a year old, with significant breathing difficulties, no provider is jumping up and down to sedate him and perform any procedures. The dr. asks us to coordinate with him should Max require another procedure or diagnostic evaluation that requires sedation.

Wait, what? How am I supposed to coordinate anything at the hospital?”

This is when the order for the ear tube surgery is placed. I then call every provider I was asked to and start this incredibly painful process of maximizing Max’s sedation time.

While under anesthesia, the audiologists will test his hearing, his ear tubes will be placed by ENT, urology will jump in and repair the testicle, pulmonology will pop in and shove a camera down Max’s throat to see his lungs and then he will be kept sedated and taken over to radiology for the MRI.

What a fucking day that was. As it was winding down and he is brought to recovery, we have multiple meetings with multiple doctors. This is what we learn:

-Maxwell has “floppy lung muscle tissue” which is called bronchomalacia

-Max had a successful testicle tack down and a minor hernia repair

-Maxwell has a tethered spinal cord. His cord is tethered way past where it should have ended and is wrapped up in an unknown mass. That mass has the possibility of being a tumor.

At that neurosurgery appointment our world changed. At that appointment, I became someone different. Resentful, angry, confused, heartbroken.  Max requires serious surgery for his spine. Neurosurgery explains the severity without trying to worry us to the point of no return, but it was too late. We are deep in the throes of learning about spina bifida because Max has “occult spinal dysraphism” which is a form of spina bifida. The only way to diagnose whether the mass at the base of the spine is a tumor is in the operating room. Max’s future was wrapped up in the outcome of this surgery. Which is now scheduled for May. Before Max turns two, he will have major spinal surgery and there is nothing I can do about it.

Team Max is born from our inability to control or change anything about our situation. The idea comes to me: make a T-shirt that friends and family can wear on surgery day. Throughout the day people can send us selfies and photos of themselves wearing their supportive T-shirts. Photos and positive messages for Max…hope for Mom and Dad.

From team Max, we received some of the most genuine, heartfelt, real and warm gestures. People we barely knew were dropping off meals at our house. Word spreads on social media and through Carly’s preschool and we received messages, toys for Max, inspiration for us…various forms of comfort from kind and loving people.

Surgery comes and Team Max is in full swing. The surgery took hours and when it was over, my baby was in the pediatric intensive care unit, on heavy medications to keep him comfortably sleeping…and still. The outcome of the surgery was both a relief and a devastating blow. While the mass at the base of Maxwell’s spine is “most likely” not a tumor, his spinal cord cannot be completely released from the mass. Tangled up into the mass along with his spinal cord are essential nerves for Max’s bladder and bowel control. If those nerve roots are severed to free the entire spinal cord, Max will lose his bowel and bladder control for the rest of his life.

In the surgery waiting room on the third floor of the hospital, tucked back into a corner, I can feel myself seething with resent. Every parent who looks relieved their kids five second ear tube surgery is over is just adding to my rage.

Exhausted, overwhelmed we comfort one another by saying, “one day we will look back on today and remember how scared we were…but we will survive this”. This became and is still our mantra.

Max recovers well in the hospital for the most part and I would like to mention here that I/we are responsible for thickening all of Max’s liquids in the hospital. Anything the child is going to consume has to be monitored. I don’t leave Max’s side. I can’t. I am consumed with worst case scenarios, how to build ramps for the house, how are we going to manage this, how am I going to manage more?

Read on for part two…