Drake was diagnosed in utero with a Congenital Diaphragmatic Hernia (CDH for short).
I had no idea what this was before the day I heard the doctor say those words, those three HUGE words that made my world come crashing down. After hearing that my baby boy may not survive I felt as if someone ripped my heart right out of my chest. My emotions were heightened, I felt the tears streaming down my face and the taste of salty tears still lingers whenever I think of it. Well, I went home to research CDH on the Internet like my doctor told me not to do. My heart literally sunk in to my stomach when I read what it was; a Congenital Diaphragmatic Hernia occurs when there is a hole in the diaphragm, and abdominal organs migrate into the chest cavity compromising the lung growth, while squishing the heart. Babies that are born with this have a fifty percent chance of survival.
I was instructed by my Obstetrician to see a maternal Fetal Medicine doctor. I made an appointment with Dr. Robicheaux. He was very nice and empathized with what we were going through. He always let me know that it was ok to cry. I cried every time we went to see him, because I was reminded on ultrasound that my son was sick. When I went to see him he gave me an ultrasound, and performed an amniocentesis to check Drake for any other abnormalities. He came back in the room after doing these tests to explain that Drake had a severe left sided hernia, but the good news was that his liver had not migrated up into his chest cavity. Dr. Robicheaux went on to let me know my options. He explained that Drake would need a lot of medical attention when born. He also explained that I had the choice to terminate the pregnancy or let it take its natural course. I chose to let GOD decide what was best and give my son a chance to live. I couldn’t bare the thought of not giving him a fighting chance to survive this horrible birth defect. I felt as if my body had failed him. With everything said and thought about we continued the pregnancy as planned and had numerous doctor visits with many different types of specialists.
The first specialist was with the pediatric surgeon, Dr. Adolph. He was a short man with a receding hairline. He had the most endearing tone to his voice. I will never forget the beautiful words that he spoke as he gave us hope, “We are in this together.” Dr. Adolph went on to tell us what was going to happen in the operating room when Drake is born. He let us know that he would be intubated before he could take a breath and brought straight up to the neonatal intensive care unit. The second specialist we saw was a Cardiologist. His name was Dr. White He was an older white haired man with a large mustache. He wore this bow tie that looked oddly out of place. He was very soft spoken and didn’t say much. He checked Drake’s heart and said that things looked good and hopeful. No signs of anything major and he let us know that he would check Drake’s heart right after birth. We left that appointment that day feeling very hopeful of our son’s prognosis.
Feeling very hopeful my husband and I felt more at ease than we have since we found out Drake was sick. All that was left was to wait. We went on with day-‐ to-‐ day activities and tried to stay positive. We were asked by Dr. Robicheaux on our last visit to take a tour of the neonatal intensive care unit. We decided that it would be best so we could actually see where Drake would be directly after birth. Erica was the nurse that had shown us around. She showed us the area that Drake would be placed, the area that we would have to wash our hands, and the area where we could put our belongings. As we toured my heart sank into my chest as I saw all of the sweet yet very tiny babies. I saw a mother crying at the bedside of her baby. I immediately wanted to break down in tears myself. Why was her baby here I wondered. I saw about fifteen other babies in there and when I would ask why they were in there I was told that it was confidential and that there could be no information given. When we were finished, Erica was nice enough to let us know that if we had any questions to please give her a call.
The day finally arrived, on Monday February 18th 2008. They wanted to make sure that all the medical staff was there for Drake when he arrived. Dr. Robicheaux had to leave town unexpectedly, So Dr. Longos delivered Drake Alexander Michel on February 18, 2008 at 2:35pm. He weighed 7pounds 14 ounces; he was 19 3/4 inches long. My poor baby tried to take a breath only able to let out a small gurgle. Burt was so excited to see him. He couldn’t stop taking pictures as he was being intubated. We just looked at each other with tears in our eyes and said “We did it, we got him here safely at 38 weeks.”
The day that we were so afraid of but yet so excited for was here. Burt and my dad were the first to go up and visit with Drake. They came back down with about fifty pictures for me. I was so amazed at how beautiful my little boy was. He had this beautiful head of black hair. I couldn’t stop saying “my baby has hair.” My son Shawn, My mom and dad, my sister and her girls, my cousin hope & her fiancé, Robert, and my friend Dara was there to welcome our little guy.
My cousin Shawn and her fiancé, Gant came to visit that night. (Gant works at Ochsner Medical Center where I delivered.) I tried to get up to the NICU at this point with them. It was about 9:00pm and I was so sick from the blend of drugs and the emotions going on inside I couldn’t get out of bed without vomiting. Shawn and Gant went up to see Drake and came back down to let Burt and I know how he was doing. They came back to my room and said the Drake was stable. At about 5:00 am I woke my husband up to go upstairs to the neonatal intensive care unit. I Finally got to see my baby. Erica, the nurse that had previously shown us around the neonatal intensive care unit was the nurse taking care of him. She later became one of my favorite nurses. He was gorgeous! All I could do was stare at him. Erica let me know that so far he was stable. She was so nice to me, I felt comfortable leaving my son in her care. We knew that most babies born with a congenital diaphragmatic hernia have what they call a honeymoon period. It’s the first 24 hours after they are born that they do wonderful. The next day Dr. Adolph came in to let us know that Drake was having difficulty keeping his saturation levels up. He let us know that Drake will probably have to go on ECMO. This is a heart and lung bypass machine that would oxygenate his blood and allow his heart to rest.
At around 6pm on February 19th drake had to be placed on ECMO. His heart and lungs needed a break so they could heal themselves. Drake also had PPHN. In other words the valve that usually closes in a baby’s heart at birth didn’t close when Drake was born. Drake had his good days and bad days on ECMO. My cousin’s fiancé, Gant
worked the ECMO machine a few years ago. He came back up just to sit and work Drake’s ECMO pump. It really meant a lot to Burt and I that he was there. He let us know in laymen’s terms how drake was doing and how everything worked. I don’t know if Gant and Shawn will ever know how much we appreciated them. Drakes oxygenator pump on the ECMO machine had clotted off. They had to change it out which meant they had to take him off for a few minutes to replace it. Burt and I had gone to the hotel room about thirty minutes before this happened.
The phone rang and Dr. Adolph had calmly told us what had happened and what they had to do. We immediately rushed back up to the neonatal intensive care unit and waited to see our son. Dr. Adolph came out and let us know that Drake did great. He was impressed at how well he did off of the pump. Drake stayed on ECMO for a few more days and finally after 15 days, March 5th they were able to wean him off and do his repair surgery off of ECMO. The surgery went great. Dr. Adolph told us that Drake's stomach, large and small intestines, spleen, and bowels were in his chest. He was able to put it back where it all belonged but Drake needed a Gortex patch to close up the diaphragm. At this point Drake’s chances of survival were great. His PPHN was subsiding and his lung function was great. Burt and I were the on cloud nine at this point. We couldn’t stop smiling and letting people know that our little fighter was winning his battle. Drake was doing great. He was steadily improving. He had to have a chest tube inserted after surgery. It was there to drain the usual fluid after surgery. Drake also had problems with his blood clotting too much even with all of the heparin that was given to him. So everyday he had his IV placed in a different spot. Drake’s chest tube kept draining. They soon had to put one on the right, because the fluid had now started building up around and compromising his right lung. The doctors decided to send the fluid to the lab to have it checked. The results came back saying that drake had developed chylothorax. Chylothorax is a type of pleural effusion. It results from lymphatic fluid (chyle) accumulating in the pleural cavity. The doctors decided to put him on a medicine that treats chylothorax called Octriotide. After a few weeks on this medication nothing happened. Drake was still draining fluid like crazy. Dr. Adolph decided to have drake go through another surgery to put a stint in his artery that had clotted off. He had the surgery and it went well, they were able to get the stint in after about 5 hrs. We waited to see if that would help the drainage stop.
It didn’t, the fluid just kept draining. Dr. Adolph then said that he would try one other surgery. He would try and surgically close the valve. After surgery the Dr. came out and said that surgery didn’t go to well. Dr. Adolph was able to stop some of the drainage but not all of it. All we could do was wait and see. This was April 3rd and Drake was very swollen after having the surgeries so close together. Saturday he was struggling to keep his saturation levels up. I knew in the back of my mind what was going to happen if this didn’t get better, we would lose him.
Sunday morning after getting two hours of sleep, I called the neonatal intensive care unit to see how Drake was doing. The nurse let me know that he was on 100 % oxygen and his saturation level was in the 70s. Immediately hanging up the phone and simultaneously getting dressed, we immediately rushed up to the NICU. It felt like a never-‐ending hallway as we ran to the elevator. When we finally arrived to the neo-‐natal intensive care unit Drake was very pale and swollen. He looked like he was struggling to breathe. The doctor let us know that Drake wasn’t urinating and that he had some fluid inside his lungs. He tried one more medication to try and get him to urinate. His poor body was so swollen he looked like a giant marshmallow. The medicine didn’t work so we had to make a decision. We could put him on a larger vent, which would only prolong the inevitable or let our Angel go. Burt and I just said, “enough is enough.” We chose to hold our beautiful son and let him know how much we loved him before he left this world in peace. The nurses started clamping off his medications and took away some of the tubes only leaving the intubation tube in. When the nurse gave him to me it was a bitter yet sweet moment. I finally got to hold my baby for the very first time and I had to say goodbye at that same moment. I cried the hardest that I ever had on the inside while staying strong for my son as he made his journey from this life. I told him that it was ok for him to leave, that we would be ok. I let him know how much I loved him and I sang him “Twinkle Twinkle, Little Star”, just like everyday since he had been born. I took in every detail of his sweet face as I almost drowned in the thought of forgetting it. As he clung to life I knew that this would be the day forever etched into my brain. I stroked his dark curly hair as he held my finger so tight and in that moment, he was gone. The nurses cleaned him up and took the intubation tube out then brought him to us in a private room. Burt, my mom, and I held our Angel for the first and last time. My sister and dad took the time to say goodbye as well. After a few hours we kissed him and the nurse took his cold, lifeless, worn out little body back. I never thought that I would be leaving that hospital without my baby. I guess GOD had greater plans for him.
My husband and I decided to have Drake cremated and we brought him home where he belonged. We had people over to celebrate Drake's life that following weekend. We celebrated the fact that he was our child. No matter the time that he was alive, he will forever be in our hearts. There is not a day that goes by that Drake is not thought about.
After Drake’s death my husband and I knew that we wanted to honor his memory. When we left the hospital all we had of Drake’s was his “personal belongings” bag. I felt extremely alone in that moment not carrying my son to the car, just his “bag of belongings”. I never want another mother to feel that way after suffering the loss of her baby. That’s why I decided to join Project Sweet Peas and start my own local project, Drake’s Doodlebugs. We make memory boxes so that parents get the proper items to remember their baby by. We also include a stuffed animal so that the baby’s mom will not have to walk out of the hospital empty—handed as I did. Drake’s Doodlebugs also puts together NICU Care Packages. These Packages include items for the parents as well as for their baby. We provide toiletry kits, journals, hand/foot molds, blankets, knitted caps, etc. All of these things offer a sort of comfort when your baby is in the NICU. As a bereaved parent, I want something positive to come from my son not being here with me. If I can make the experience of having a child in the NICU or having to collect memories of a child easier for a parent, then that is my goal.