The Max Man
The story of our baby boy Max, born on May 26, 2020.
|How it started||How it's going|
First trimester screening – high risk for down syndrome
It was the holiday season in mid-December 2019 and my wife, Nicole and I were at the gym trying to burn a couple calories before we headed down to my Dad's later that day to celebrate the holidays with his side of the family. After our workout, I was waiting for Nicole in the lobby and it took her a little longer than usual to come out of the locker room. She finally came out with tears in her eyes. I comforted her and asked what was wrong. She said the results came back from her first trimester screening and there were elevated protein levels indicating a higher risk of our baby having down syndrome. More tests were needed to confirm.
I'm not sure if it was because my initial instinct was to comfort Nicole since she never cries, if I knew it didn't matter what abnormalities or conditions our baby had that we would love him/her just the same, or a combination of both but my initial impulse was the opposite of panic or worry for the future. I was totally comfortable with what I just heard and knew that no matter the prognosis that we would do what we needed to make it work.
I said what I could to comfort Nicole, we went back to the doctor that same day before heading to my Dad's to get a follow-up highly sensitive and specific test that could confirm with 99% certainty via DNA analysis whether there was a chromosomal abnormality, and we went about our day and week. I'd be lying if I said the thought wasn't constantly on my mind since it would in fact change the course of our lives depending on the results, but I would describe the feeling I felt as more anxious and even excitement than fear or concern and we were ready for whatever might come our way.
The bilateral cleft
On our next visit to the doctor to get the 20 week anatomy scan (we visited around 15-16 weeks because of the previous results we received), the doctor casually came in after the radiologist did her work and said, “I guess you know by now your baby doesn't appear to have down syndrome” as if we should've already received the news. Nicole and I looked at each other and smiled, but I know our heart rates and emotions were racing even though we maintained our poker faces as to not look like weirdos in the room with the doctor. But then he gave us some new news, that our baby appeared to have a bilateral cleft. We asked some questions and finished up, went home, and I think we independently went on a research bender to find out as much information as we could. In short, the most pertinent information we found was:
- There's doesn't appear to have been anything we could've done differently to prevent it.
- With a bilateral cleft (meaning both sides of the face are affected as opposed to one side, or unilateral), there's a higher chance that the palate is also affected.
- There will be at least one surgery if only the lip is affected at around 3-5 months old and another one at the 10-12 month mark if the palate is affected.
Nicole joined some communities of mothers with cleft babies and started to learn about their journey. We were ready, at peace, and comfortable with whatever came our way.
Most importantly though, we were ready to meet our baby boy.
Giving birth in a pandemic & Max's little button
To put things in perspective, in May we were well into the COVID-19 pandemic and most of the world was already in the height of a quarantine to prevent the spread of the virus. There were strict protocols at the hospital where only one additional person could accompany Nicole and no one was allowed to wait in the lobby. We were on our own, but to be honest I'm not sure we wanted it any other way. Nicole maintained an extraordinarily healthy diet throughout the pregnancy and was jogging and walking a couple miles a day multiple days a week up until about a week before we had Max, so her body was ready to ensure our little Max man came into this world without complications.
On May 26th morning within a couple hours Max was born into the world and we were overcome with joy and happiness. He had the most distinct cry that we still recognize to a tee today, and he was beautiful in every way including his cleft lip, palate, and his “little button” as we called it (the little piece of skin at the philtrum right underneath the nose). With a bilateral cleft lip, the skin under the nose didn't close completely during the first trimester and depending on how far it develops, can leave a small piece of skin where fusion would've usually occurred. We loved his little button.
The first surgery
This was probably one of the hardest moments of Max's journey so far. To clarify, it wasn't hard at all for that little guy, but hard for Nicole and I. We thought we were prepared for all of the details, and we were absolutely prepared from a logistics and technical perspective, but not from an emotional one. Nicole held him as we took him to the entrance back to surgery, we placed him down on the little baby gurney, and watched him as they rolled him back. He looked back at us and instantly started crying as if we had abandoned him with strangers and we were never coming back. It tore us apart as we went back to our room and we both broke down as soon as we entered it and shut the door. This feeling was completely biological, uncontrollable, and illogical for the most part. I mean, in a little over an hour we knew we'd be with him again holding and comforting him as he began his healing, but let me tell you the thought of relinquishing control of your baby to someone else was one of the most incredibly humbling experiences. We had complete trust in his care team, but I'll never forget the moment of him rolling forward looking back at us and the doors shutting as the nurse kept walking away from us.
When they brought him back to what would be our permanent room for the next day and a half, I knew the very moment I heard his faint cry getting closer that it was him. We were both ready to see and hold him to make sure he knew it was okay. Needless to say he looked pitiful, and it took him a number of hours before he was ready to try and eat. All things considered though, it went smoothly and we were really happy with the results and experience. Big props to our surgeon and Children's Hospital of Atlanta (CHOA) for taking good care of Max during this time!
Bliss at 7 months old
My mom is one of the most caring and loving people on the planet, so much so that there were plenty of times throughout my childhood and teenage years I would get annoyed at her wanting to do so much for us. She always wanted to be involved however she could in what me and my siblings had going on. She would occasionally remind us that “you'll understand one day why I am like I am when you have children.” We would roll our eyes and go about our day. I can now say I know exactly what she means. It is incredible the bond you develop with your child during the first few months of life, and now that his personality is coming through strong and is constantly laughing, jumping, and starting to crawl, this journey has been one of the best times of my life.
We are excited to say that Max is doing great and we've successfully avoided getting infected with COVID-19 so far (knock on wood). Max is still eating breast milk out of a bottle and eating pureed avocado, carrots, sweet potatoes, and other healthy veggies. He's as normal of a baby as you'd expect and loves to read books and play in his bouncer! He's starting to find his voice and beginning to crawl ever so slightly, which is an inspiring sight to see a baby finding new tricks and learning about the things around him. His 2nd surgery is coming up to repair his palate in mid March so we're preparing for that. We're excited to continue our journey with Max and will update in the coming months on his progress!