When I started thinking about what mindfulness meant to me, I kept going back to all the poignant, never to be forgotten moments from the past 3+ years.
Having a child provides a tremendous amount of memorable events. But add to that a traumatic experience, and your mindfulness becomes heightened exponentially.
After finding out my 1st son would be born with a congenital diaphragmatic hernia (CDH), I remember so many details of those remaining 3 weeks (we found out at 37 weeks).
CDH occurs when the diaphragm fails to fully form while the baby is still in the womb. When this happens, the organs from the abdomen float into the chest causing stress on the lungs. The additional organs that float into the chest cause the lungs not to develop properly. CDH can also cause heart issues along with a host of other things. Basically, when one organ doesn’t develop properly at this crucial stage of the baby’s development it can snowball into a lot of other complications. The diaphragm forms at around 7-10 weeks of gestation. There is only a 50% survival rate for babies born with this birth defect.
I remember the long, long walk to the doctor’s office after she gave us the diagnosis during a 37 week level 2 ultrasound saying “I’m sorry you child only has a 50% chance of survival, please collect yourselves and meet me in my office when you’re ready.”
I remember the ride home when my wife handed me the phone because she couldn’t tell her mother the news.
I remember getting the 1st sentence out but not being able to complete the next sentence when trying to describe the severity of CDH.
I remember trying to call my parents to give them the news but being completely unable to talk on the phone. So I drove to their house.
I remember getting to their house and barely being able to walk up the steps and completely breaking down as soon as my mother opened the door.
I remember feeling completely alone and overwhelmed.
I remember meeting our surgeon for the first time and her saying, “I will fight for your child as hard you want me to, but I need to be completely honest here…”
I remember being in a daze for periods of time during those final 3 weeks.
I remember pacing back and forth waiting for it to be time for my wife to go back for her c-section.
I remember the OB giving us a play by play and waiting, just waiting for even the smallest cry (as many CDH babies don’t have enough lung capacity to cry).
I remember seeing my son in the NICU for the first time with all the tubes and equipment he needed to keep him alive.
I remember sending pictures to my wife because she was in a completely different hospital and wouldn’t get to see him for at least 3 more days.
I remember the song that played on the radio every time I drove to the hospital to see my son in the NICU – Airplanes by B.o.B.
I remember my wife trying to get as close to our son as possible but the table was just too high, so she broke down until I got a nurse to help lower our son.
I remember the look of concern and worry on my wife’s face the first time she held our son.
I remember getting the call from the Neonatologist at 2 am (about 8 hours after our son was extubated) telling me that something had to be done as our son was having a lot of trouble breathing.
I remember the day my son came home after 29 days in the NICU.
I remember the expression on the doctor’s face during our 20 week level 2 ultrasound suddenly changing. My wife and I looked at each and without saying a word, both our hearts dropped.
I remember the doctor’s words, “I’m so sorry, but your son’s heart is displaced and I can’t find any other explanation other than another diaphragmatic hernia. I’m so sorry.”
I remember calling my 1st son’s surgeon and her telling me that she was having a great day until she got my message and that she was so sorry.
I remember the 1st time my son finished his whole bottle without needed his NG tube when he was a little over a month old.
I remember my wife working as hard as possible to keep life as normal for our oldest as his little brother was fighting for his life while in the NICU for 2 months.
What do you remember?
Neil Rubenstein has been married since 2003 to his wife, Amy. His CDH survivor (Aidan) was born in June 2010 after being diagnosed at 37 weeks. Aidan had surgery to repair his hernia when he was 4 days old. His surgeon discovered at that time that Aidan had no diaphragm at all, all his organs were in his chest (except for his liver), his heart had been pushed to the left side by his stomach. Even with all this, Aidan did not need ECMO and was only in the NICU for 29 days. Aidan had a follow-up procedure at 13 months old to close up an abdominal hernia that his surgeon created to give his organs room to grow once she moved them all back to their proper location in his abdomen.
While Neil and (his wife) Amy were still dating, they started Creative Celebrations, a children party planning and entertainment company. Neil has over 15 years experience in Integrated Marketing Communications and is currently looking for his next permanent role in the Chicago area.
Amy and Neil recently had their second child in September 2013. After spending 2 months in the NICU, Brody came home on an NG tube. Brody will need the same follow-up surgery as his big brother when he is 1 year old. Neil is the former CHERUBS Illinois (and Wisconsin) Rep and Co-Chair of the Parent Advisory Board. Neil recently created Help4CDH Families and is working towards nonprofit status to be able to continue to provide a forum for people affected by CDH to meet and support each other as well as to be able to provide financial support to CDH families in their time of need.