Through a new program with Breath of Hope, we will collect and process donations to help families. When families discover their child has congenital diaphragmatic hernia they are overwhelmed emotionally and soon financially. Most realize that they will have to relocate, one or both parents may be without their jobs or income and the expenses and bills mount. We will collect donations marked for Mateo’s family and process them. We will send acknowledgement letters to donors and to the family letting them know you donated in honor of Mateo! (We do not tell families how much was donated, we are all just happy you do in their child’s name!) Once processed, we will then send the donations as grant funds to help Mateo’s family through their CDH journey to get him home! If you have any questions, please feel free to contact: firstname.lastname@example.org – To donate, please click on the Heart Image to the right of the page, this will take you to Paypal and you can make a donation please indicate it is for Mateo or Mateo’s CDH Journey. Thank you!
Mateo’s LYFE (Love You ForEver), a CDH story from a Father’s Perspective
What do you do when life hits you with the most difficult decision you’ll ever face? Do you take the easy way out? Or do you fight with every fiber in your being? Ever since I was a child I have swam upstream against the current and this time would be no exception. Our story begins at conception, in early 2012, though we would not be informed for several months……
Our firstborn son was two when my wife and I decided it was time for him to have a play buddy. So we got started and a few months later, we were blessed with the news that our messengers successfully made the delivery. All was going as planned. Our baby was growing, the amniotic fluid levels were good and the doctors and I were sure all was well. But, my wife Liz, had doubts. Note to self always, always, always follow your gut. I pushed her concerns aside; after all, we had a lot on our plates.
Within a year we were jobless and homeless. We moved in with family in northern CA to keep a roof over our heads. I then totaled my truck. My wife also had had three separate accidents with her vehicle. And the impact of living with others, under less than ideal circumstances was taking its toll. I chalked my wife’s fears up to the surrounding stress.
Liz insisted that something was wrong. On May 15th her concerns were confirmed. May 15, a day that I will never forget. Three years before on May 15, we found out we were pregnant with our first boy. On that very same day, May 15 we also found out about my wife’s grandfather passing. And now on May 15 three years later, in a small hospital office we were told our unborn son, Mateo, had a severe case of congenital diaphragmatic hernia. Complicated by a radial club hand (missing radius bone in left arm), renal agenesis (missing left kidney) and his liver is “up” in his chest. The prognosis, a 6% chance of survival, and due to his many anomalies he was not a candidate for invasive in- utero medical procedures. It was, as the doctor told us, up to our faith and lots of prayers.
This was all told to us in less than five minutes. The room had a sudden chill. The once brightly lit office turned dark and cold, as if gloom had fallen upon us. The sun had withdrawn. The only sound came from the clock on the wall. Tick, tick, tick. All the air escaped from my body. It was as if a sledgehammer had been catapulted into my chest. My wife’s mouth was gaping; all the blood had rushed from her face. The only hint of color was in her eyes, which were now filled with tears. As a soldier snapping back into action after an explosion, we both firmly told the medical staff, we were keeping Mateo. The life given to us was not ours to take away.
At this point the surgeon, nurse, social worker all looked as if they had run into a wall. The social worker began to stutter, the nurse shifted her weight. You could hear her leather Dansko clogs squeak. The surgeon proceeded to inform us of what gruesome difficult ride we have ahead. Being sure to often pause for affect and also mention that it was okay to opt for abortion. The statistics and past history of cases rolled off his tongue, like a used car salesman explaining a Honda’s features. I wanted to grab him by his tie and smash him through the window. But I couldn’t be angry at him. He was merely doing what he was contractually bound to do. He had to be sure to cover all areas, “CYA” as the business says.
I didn’t have the dream affect many people have said they had. I didn’t have the feeling of “when am I going to wake up”. It was more of what is going to go wrong next. The surgeon finished his spiel, and then again came the silence. The medical staff looked to us as a puppy to its owner waiting for its meal. They asked us if we had any questions. Questions? How could I put a sentence together? There was no way to prepare for the questions we could ask in this situation. My wife and I shook our heads. It was like that moment at a funeral procession when everyone is just standing around, lost in thought. We shook hands with everyone and left.
The walk to the car was a maze. Both of were us agreeing to disagree with what we were told. We were suddenly in bumper-to-bumper traffic on the 101. Our confusion was overtaken by full-blown anger and disbelief. My wife recited the list of all the prenatal vitamins she had been taking, searching for any clue as to what may have caused our son’s condition. All I could focus on was 6%. Six percent. Most CDH babies are given a 50-50 chance of survival. Our son has 6%. For the next few months this is all I thought about – 6%.
The days following we try to get back into the routine of things. Not really forgetting about our situation but not wanting it to consume us. I am a father. I have a son and wife to be strong for, as well as my unborn son. They still needed my love, my patience, my attention. They needed to know they were here with me in the moment. I try to grab a hold to any shred of normal I can. But you are your worst enemy. I was unknowingly about to do battle with myself.
The days dragged on, and yet time zoomed by. It was odd. Each Monday came faster than the next. But my nights would drag on into the wee hours of the morning, lost in thought. My time began to be consumed by Internet searches on CDH, radial bone, statistics, foundations, and charities.
I was plagued about whether or not we made the right decision. I questioned karma, I questioned Yahweh, and I questioned my faith. One thing I learned from this roller coaster ride is there is no room for doubt, especially self-doubt. For when you doubt, your fears start to win and overshadow rational thought. There is no time to question your last decision. If you ponder too much then you won’t be able to continue on for your family.
Each month that giant mountain of doubt would rear its head. Because of Mateo’s condition, close monitoring was necessary. We have become very familiar with the behemoth that is called UCSF Parnassus Medical Center. During these visits there were sonograms, urine strips, weight assessments, social worker meetings… and at each visit, one or more of the medical staff voiced the option and reasons for abortion. Can you imagine?
This is supposed to be the most fulfilling time of your life, bringing a child into the world. But each time you go for a check up on that life you’ve created, you’re told you should consider ending it. So of course our friend doubt came screaming. From 8 AM to 4 PM, eight hours plus the 100 mile round trip car ride, our relationship became “Doubt’s playground”. Our emotions flew from the 15th floor of the NICU to P6, “pink” in the parking garage. …arguments, praying, sobbing, hugging, shouting, forgiving, kissing, holding hands, walking, eating all took place on the campus of UCSF. And so we end here October 1, 2012 at 9:16 PM still anticipating the birth of our son, Mateo.
Jose Luis and Elizabeth
In the early morning hours of Monday, October 8, 2012, Mateo, a few days overdue, graced our world with his beauty.
His parents were told due to other complications that the hospital would not intervene but he was born with a very strong heart and the UCSF staff pulled out all the tricks of their medical trade they could to have this amazing miracle survive. With heavy hearts and tears we were devastated to report that sweet Mateo chose wings later that evening. We want to continue to hold his family and his brief sweet and amazing life in our thoughts and prayers. LYFE – Love You ForEver – as his dear father wrote. We will also remember you forever sweet boy. He was born with wings, we mere mortals just couldn’t see them. Fly high angel.