Cooper Life Fund is a 501(c)(3) non-profit organization...
..created with an objective to develop methods of raising money which will aid children and families of children born with heart defects and other serious medical conditions. John and Ashley Fontenot founded the organization after their son Cooper Fontenot was born in 2004 with a Congenital Heart Defect called Transposition of the Great Vessels.
Cooper spent many weeks in the hospital and endured several hours of open-heart surgery when he was only 9-days old. Although Cooper's treatment and care is ongoing, he is alive and well today because of great medical care and because of intensive cardiovascular research.
Cooper Fontenot's resilience is evidence that there are silver linings in all dark clouds. We at Cooper Life Fund are dedicated to sharing with others our fortune of Cooper's survival and recognizing how miraculous life is. We are also committed to honoring those families that were not as fortunate and helping to ease their sorrow by letting them know that they are not alone.
Our HOUMA fundraising 5K/1-Mile race raises money to assist families whose newborn is seriously ill and must be admitted into the Neonatal Intensive Care Unit (NICU) at TGMC. 100% of proceeds from this race stay right here in our community helping the families of our community. My wife Ashley and I are committed to assuring that our non-profit foundation does not use proceeds for administrative salaries or any other costs outside of organizing our race. Once race insurance, government permits, etc are paid for, the rest is used strictly for the families of these sick newborns.
The way we help is by providing each family in NICU with a care package which consists of a variety of items, such as diapers, layette's, wipes, along with other items essential to a newborn. The idea behind this is that most parents aren’t prepared for such a tragic event and providing these supplies to the parents prevents the hospital from providing these items to the baby (and charging the parents on the bill), therefore keeping the hospital bill from growing.
Additionally, we provide a gas card to the parents to help with travelling. When momma gets discharged and the baby doesn’t, this sometimes creates a burden with travel expenses. Our goal is to offer ways to keep momma and baby together as much as possible. If a newborn remains in the NICU longer than a week, we offer the families a restaurant gift card so the parents can have an evening together in an effort to ease the stress of the situation...even if only for a couple of hours.
Other items we provide are based on a case-by-case basis. Each family is assigned a social worker and that social worker will make recommendation based upon the economic needs of the family. We've provided families with car seats, strollers and other items that the family did not have or could not afford. Many of the NICU babies are admitted as a result of premature labor meaning many of the families have not yet had a baby shower and have limited supplies to care for their newborn.
John & Ashley Fontenot are the proud parents of Remy & Cooper Fontenot. They are the founders of Cooper Life Fund and organize two fundraising races every year, one in Houma, LA and one in Lafayette, LA.
Learn more about each of the Fontenot family members by using the menu on the left or by clicking on the name below:
Cooper is Born:
On Saturday afternoon, November 20, 2004 in Lafayette, LA, Cooper entered our world. Labor and delivery was very smooth. The morning started with John and 22-month old Remy heading for birthday party supplies for Ashley. She was celebrating her 26th birthday that same day. Family was driving in for a very low-key birthday barbecue that afternoon since Cooper was due the very next day.
John received a phone call from Ashley asking him to hurry because she was having contractions. By the time John and Remy got home the contractions were much closer and off to Women’s and Children’s Hospital they went arriving right around lunchtime. After only a few short hours at the hospital Cooper Landry Fontenot was born at 3:24 pm weighing 8 lb. 9 oz.
Ashley and John held Cooper and took the customary newborn baby photos. This would be the first and last time they held Cooper that day…and they would not get to hold him again until he was 8 days old - the night before his surgery.
A Broken Heart:
The delivery RN noticed that Cooper had a bluish hue to his skin tone and immediately alerted the OBGYN who ushered Cooper into the nursery to get vital sign readings. All vital signs were fine except for his SAT's (Saturated Oxygen Level - oxygen level in his blood stream) which was showing only 55% whereas it should have read 100%. There was clearly a problem but the nursing staff could not diagnose the problem. And since it was a Saturday the normal full staff of doctors was limited to the minimized weekend crew. The on-call doctor was called in and John had to return to the delivery room to inform Ashley that Cooper had some medical issues but no one could say exactly what it was.
Ashley was moved to her own room as the doctor’s diagnosed Cooper condition. Finally around 7 pm that evening a Neonatologist came in to explain that Cooper was born with a congenital heart defect that occurs when the large vessels are not properly connected to the heart. This defect is called Transposition of the Great Arteries - or simply referred to as Transposition - where the Aorta and the Pulmonary Arteries are connected to the opposite chambers of the heart.
With the two main arteries switched, oxygenated blood could not make its way from the lungs to the rest of his body. In essence, Cooper had two closed circuits of blood – blue (oxygenated) blood circulating form the heart to lungs, heart to lungs, etc. and red (un-oxygenated) blood circulating form heart to body, heart to body, etc. The blue blood needed to mix with the red blood so that he body and his major organs could get the supply of oxygen needed to survive.
Initially the Pediatric Cardiologist (Dr. Gutierrez) ordered a helicopter for a night flight to transport Cooper to Tulane Medical Center in New Orleans, LA that evening as his condition was considered very critical. However, a winter storm prevented any type of travel that night and plans were changed to have him transported by ambulance the very next morning. John and Ashley were able to visit Cooper in the Neonatal Intensive Care Unit (NICU) that evening.
Cooper is Baptized:
Cooper was in such bad shape that John and Ashley were offered to have him baptized that very evening. The priest from the parish where John and Ashley attended church was called in and Cooper was given his official baptism while feeding tubes, IV lines and an oxygen mask was connected to him. Prayers were spoken aloud asking God to give Cooper the strength to fight as hard as he can. There is no way to describe what a parent goes through while watching their son get baptized at only 10-hours old.
Day 2 – Tulane Medical Center:
Cooper arrived at the Tulane Medical Center in New Orleans on Sunday the 21st of November and almost immediately underwent a cardiac catheterization procedure called Balloon Atrial Septostomy.
This procedure is only a temporary fix which opens a hole between the two upper heart chambers allowing the blue blood and the red blood to mix. This procedure would allow Cooper’s O2 levels to climb to a more manageable range.
Day 3 - ECMO:
On Monday the 22nd, Cooper reacted poorly to the Balloon Atrial Septostomy that occurred on Sunday night and had more than a dozen episodes that affected his vital signs. The medical team was close to putting him on a machine called ECMO (Extra-Corporeal Membrane Oxygenation) which is literally the last resort.
That morning the Tulane Neonatologist indicated to John and Ashley that the ECMO machine was being prepped for Cooper and should be ready that afternoon. At that time a guardian angel by the name of Dr. DeLeon strolled in. He was Cooper’s surgeon who had been overseeing Cooper’s case. In a thick accent that had a hint of Portuguese to it, Dr. DeLeon said, “The kid’s gonna be fine. No ECMO”. This incited a debate between Neonatologist and Surgeon, both explaining why ECMO was and was not needed. Dr. DeLeon, recognizing that this debate should not occur in front of Cooper’s parents invited the Neonatologist to discuss privately. After what seemed like forever, Dr. DeLeon returned alone and again spoke the words never forgotten by John and Ashley: “The kid’s gonna be fine”.
Miraculously, as predicted by Dr. DeLeon, Cooper began doing better. By Monday night Cooper was in a stable condition and his vitals were in the proper range. Although he was considered stable, he was still critical. On Tuesday November 23, 2004, Cooper made a dramatic turnaround and was doing much better as compared to Monday. At 3 days old, Cooper was definitely headed in the right direction.
The First Week:
Throughout the following days, Cooper was on a dozen or so medications which were meant to sustain his life and make him stronger for surgery. He was on a breathing ventilator and was on certain medications that paralyze him so that the other medications can do their job without much struggle from Cooper (he was a big boy with a lot of fight in him). In short, he was in a medically induced coma.
His little bed was decorated with items from loved ones that have been blessed, kissed, hugged and prayed upon. A picture of his brother Remy was placed at his feet with a note saying how much big brother loves him. A prayer card, a teddy bear that simulates sounds from the mother’s womb, a picture of Mommy, Daddy and Remy and a sign with Cooper's name on it made by his Nurses are only a few examples of what slept with him at night. He was never alone.
Open Heart Surgery - Arterial Switch:
Although he was considered stable, the window to operate on Cooper was closing rapidly. The type of surgery he was to undergo is called an Arterial Switch Operation which is an open heart surgery where the aorta and pulmonary artery are switched back to their normal positions. This is a high-risk operation but the benefits outweigh the risks. There is absolutely no way Cooper can live without this operation. The surgery was scheduled for Monday, November 29th, when Cooper would be 9 days old. The surgery was set to begin around 7 a.m. and hopefully be completed surgery by 3 pm. This would be the only chance to operate...otherwise the medical team would have to reconsider putting Cooper on the ECMO machine.
There are many factors involved with this surgery - prep work - actual surgery - completion and finish work - recovery. Every step is major. Every step has risks. As each step is successfully completed, the next step comes into play with just as much peril, until finally the stage of recovery is reached. Recovery will be vital and in the best case scenario, according to the surgery team, he will take a minimum of 6 weeks to recover at the Tulane Medical Center and will then require even more specialized care once he gets to go home.
The hospital staff advised the Fontenot family to plan on spending Thanksgiving at the hospital in New Orleans with Cooper and likely Christmas and New Year's as well. Boy, were they wrong. John and Ashley Fontenot never imagined that their son would be the most critical patient at the NICU at Tulane Medical Center, but he certainly was. They knew that Cooper was hanging in there thanks to all of the prayers from everyone in their lives…and even from many people they did not know.
Love from a NICU Nurse:
At 8-days old, Sunday November 28, 2004, the night before Cooper's surgery, something special happened. Our NICU nurse, also named Ashley, did something that showed us how just how special and amazing she and all the NICU nurses are. Late that night, less than 12 hours away from the start of Cooper's surgery, Nurse Ashley gave Ashley and John the opportunity to hold Cooper for the first time since he was held minutes after his birth. With the many wires and tubes running into Cooper's body, extreme care had to be taken when lifting Cooper from the hospital bed into the arms of his parents.
The moment was wonderful, yet bittersweet. Although unspoken, both Ashley and John new exactly why Nurse Ashley did what she did. She wanted to give them a chance to hold and hug Cooper one last time before surgery…just in case.
The Day of Surgery:
The morning of the surgery (Monday, November 29) went relatively smooth. Both sides of the family and some very close friends were present. Cooper was rolled out to surgery by 6 a.m. with surgery set to begin by 7 a.m. The family was to wait in the surgery waiting room where they would get a call to inform them when the surgery begins and provide updates throughout the surgery.
Around 9 a.m. the family had not yet received the call indicating the surgery had begun, when suddenly the surgical cardiology team came into the surgery waiting room and sat with John and Ashley and the entire family. Dr. Nancy Ascuido informed the family that start of surgery was being delayed due to one of Cooper’s lungs collapsing and his heart going into a state of arrhythmia. The surgery could not continue until these issues were resolved. The news was very overwhelming and upsetting. After many prayers and what seemed like a lifetime, the surgery room phone range to inform the Fontenot’s that the surgery had begun.
Over the next 6 hours the surgery team worked on Cooper’s heart. The medical team expressed two major concerns once the surgery was complete. The first concern was whether or not Cooper’s heart and lungs would work properly following the surgery. If at any moment either his heart or lungs failed to function independently, the ECMO machine would be reattached. The second concern was swelling. If Cooper was too swollen the surgeons would not be able to close his chest and he would have to spend the next few days with an open chest while the selling went down. Naturally, this would pose serious threat to Cooper in way of internal infections.
Though God’s grace the surgery was completed successfully and his heart and lungs functioned normally. No ECMO (again)! Even more great news was that the swelling went down immediately following surgery meaning Cooper’s chest was able to be closed. Our prayers were answered. Cooper was eventually sent to recovery where everyone got to see him. The first impression from everyone was just how pink he was…there was no doubt that his O2 levels were at 100%.
Although the surgery was a success, Cooper still had to get through the recovery phase. The doctors explained that 6 weeks is what John & Ashley should expect for a recovery period, following all that Cooper had been through. This means Christmas and New Year’s would be spent by Cooper’s side at Tulane Hospital, with an expected return home by mid-January. John and Ashley prepared themselves for this by purchasing a small 2 foot decorated Christmas tree for their room. They had no clue that the purchase was premature.
Cooper is Super:
Each morning when John & Ashley joined Cooper and checked in with the nurses to see how things went throughout the night, they were given updates of amazing progress. The nursing staff and the doctors just couldn’t believe how fast Cooper was getting better. The nurses were so impressed with how well Cooper was doing that they affectionately nicknamed him “Super Cooper”. Little did they know that the name they coined Cooper with would live on and help to raise thousands of dollars for other babies born with serious medical conditions.
Christmas at Home?:
Prayers were answered when John and Ashley were informed that if Cooper kept progressing he would get to go home sooner than expected. Trying not to set expectations too high, they hoped and prayed that Christmas could be spent at home together. Cooper did his part by getting stronger and stronger each passing day. And with that, the doctors set the discharge date for Thursday, December 16, 2004. Words cannot describe how elated everyone was to hear this. What was originally a projected 6 week recovery period turned out to be only 18 days. Further proof that Cooper is indeed Super. John sent the below email out sharing the great news:
“We learned today that because Cooper is doing sooooo great, he will be coming home on Thursday, December 16, 2004. After 26 days, an Arterial Balloon Septostomy, an open-heart surgery, a collapsed lung (twice), numerous small procedures, a ventilator for assisted breathing, over a dozen medications - including paralyzing sedatives, what seems like a million close-calls, a ton of Love and countless Prayers, Cooper gets to come home where he belongs. Ashley, Remy and I can’t wait.
Cooper will be 4 weeks old on Saturday and we will spend it together at home. Cooper has overcome odds that cannot be explained by the medical staff here at Tulane Hospital. When he got here, (we are now being told) he had a very little chance of leaving here alive. He has proven all the nurses, doctors, and surgeons wrong and is leaving here a miracle baby. Cooper is definitely Super!
To each and every one of you, thank you for the prayers and support. For those of you that have asked others to pray for Cooper, please thank them as well. We are extremely grateful for our good fortune. Without your prayers, and the power of God, we could not have made it this far.”
The entire Fontenot family spent Cooper’s first Christmas and Remy’s second Christmas together at home, where they belonged. Being together was the best gift a family could ever receive. This gift came from God and from all of those who offered prayers and support. John and Ashely experienced a blessing beyond belief.
The ordeal that they all went through over the previous month only made them stronger. The family was home, however, Cooper was still not out of the woods. As with any major surgery there are setbacks and obstacles to overcome. In Cooper’s case, his first year of life would be in and out of the hospital. At 3 months old he spent a couple of nights in the hospital being treated for potential RSV, a respiratory illness which can be very dangerous to infants having undergone open-heart surgery.
At 9 months old Cooper’s pulmonary artery was showing signs of narrowing due to stenosis. The dye procedures showed a 50% blockage of that artery. He returned to Tulane Hospital in New Orleans to undergo a Balloon Angioplasty to help open the artery. Surgeons were on standby during this procedure in the event his artery was to tear and an emergency open-heart surgery was required. Thankfully the balloon procedure was a success and Cooper was discharged the following day, Friday, August 26, 2005, and the family was back together again. The next morning while watching the morning news from home in Lafayette, there was a report of a hurricane named Katrina bearing down on the Louisiana coast and all New Orleans hospitals, including Tulane Hospital, were evacuating their patients across the country. Minors were allowed to have one parent evacuate with them. Had Cooper experienced any issues with his procedure and not been discharged the day before, he and Ashley would have been evacuated to some other hospital while John remained at Tulane. God was with us again.
Cooper Life Fund:
With everything the Fontenot family went through during Cooper’s first year of life, they never forgot just how fortunate they were to have wonderful friends, family and colleagues supporting them. In an effort to turn this situation into an even more positive situation, they formed Cooper Life Fund, a non-profit organization with a purpose of helping families with infant babies born with serious medical conditions. A series of 5K races would be the primary events for fund-raising. The races are aptly named The Super Cooper 5K. The rest, as they say, is history.