Here we go...Simon's ECMO Story: Joe's story of his son Simon's struggle on ECMO
Zephan's ECMO Struggle: Zephan is a fighter, and is spending his first day off of ECMO as I write this! Hooray!
What Is ECMO?
ECMO stands for extra-corporeal membrane oxygenator. Although I'm not a doctor or nurse, I can give you a brief explanation of what it is and how it works based on the knowledge I was given when my son had to be placed on ECMO.
ECMO is an artificial heart-lung apparatus used for patients with illnesses causing the lungs to fail who are unresponsive to maximum converntional treatment methods. The ECMO circuit is connected to an infant through large blood vessels in the neck. The therapy usually lasts between 4 and 10 days, which allows sufficient time for the lungs to recover if the disease process is reversible.
Risks MAY include:
*complications from the surgery required to insert the catheter
*Bleeding in the brain caused by the drug given to prevent blood clot
*disease from blood products
*small blood clots or air bubbles in the system could occur and be life-threatening
*Basic disease may continue and condition not improve
Benefits MAY include:
*lungs may recover
*infant may survive
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A little update in advance of the story of our ECMO journey--
My son, Mark, is now 8 and is one of the smartest kids I've ever seen! He reads at a high school level, does 3rd and 4th grade math, loves life, is obsessed with airplanes, space, and the Revolutionary War! He is a joy to be with, and a precious angel. Any parents currently fearful of what the future may bring, have faith. No matter what, your child is now and always will be a joy to you!
My son, Mark, is a beautiful child. Now age 8, every day he grows closer to my heart and brings me joy. His big green-blue eyes and silly giggle light up my day, and I can feel God in his hugs. He brings sunshine into the life of anyone he meets, and I never hesitate to tell everyone we see what a miracle he is.
Mark was born on November 8, 1996, at 2:23 p.m., and weighed a healthy 7 pounds 3 ounces. He was a bit wheezy and sputtery at birth, but we weren't worried as many babies take a while to clear the fluid out of their lungs. When he was still sputtering after 20 minutes, they took him to see the pediatrician, but I was still told not to worry (Don't they always tell you that?). His condition steadily declined over the course of the evening. When I went to visit him in the newborn nursery, where I had been told he was having a little oxygen blown over his bassinet, the nurse at the desk said he had been moved to the NICU! What a way to find out! Hysterical, crying and panicked, I went to visit him, but was told that I couldn't come in because they were putting in a tube!
They told me he may have to stay in the hospital a few extra nights, and I was hysterical!! If I had known the journey that lay ahead of us, I would have simply said, "two days? thank you!"
Several times during the night the pediatrician on call came into my room to wake me and tell me how severe the situation was- that my son may not make it. By morning he was on a ventilator taking 600 breaths per minute. His tiny blue body was shaking from the force of the machine. I was unable to cry-- filled with fear, anger, and sadness, and feeling very, very tiny and helpless. I was told of the frightening risks of ECMO, but was also told that without it he WOULD die. I took an information booklet and the consent form back to my hospital room for review. Before I had even gotten to the second page of the 6 page booklet, the pediatrician ran into the room and said if they were going to do it they had to do it right then! Frantic, scared, quiet-- I was overwhelmed as I signed the form about this magic machine I had never even heard of before.
It's a helpless feeling to have a sick child and not be able to do anything to help him. My precious angel was in someone else's hands and there was nothing I could do about it. I agonized over his illness-- was it my fault? Something I did? Friends came to the hospital to visit, unaware that anything had gone wrong. They had cards saying "congratulations" and "what a blessing!" Although I smiled and graciously accepted gifts, I was furious at God and everything else for this! What blessing?!?!?! Whose sick idea was it anyway-- to leave me alone for 8 months preparing to raise a baby by myself and then not even give me a baby!?!?!
He was on ECMO for 6 days. It was a struggle both for him physically and for me emotionally. The nurses were great and let me do what little things I could for him- change his sock and hat (all he could wear), put a little lotion on him,... His doctor, Sharada Pai at Richland Memorial Hospital, Columbia, SC, was amazingly supportive and confident. All the staff working with him at RMH were terrific, and their support made the endless hours endurable. Over the weeks he was in the hospital, I became very close with the ECMO staff. Up until recently (when the nursery moved and they no longer allow the nurses to see old patients), we still visited them each time we were in Columbia!
I passed the time reading to Mark, singing to him (the first song of Isaiah was the tune of choice), praying with and for him. There were times when I saw God in the bright glow from the bili-lights pouring helpful rays on his small frame. The rest of the room would go dark, and a bright light was shining down on my little baby. The light was coming from somewhere above the bili-lights, though. I know God was there with me, healing my son and comforting me.
I was at the hospital all the time. I would stay at the hospital around the clock. If I got tired I would go nap in the NICU family room. I befriended several of the kids in the Children's Hospital, and would occasionally go up to the CH floor and play cards or nintendo with precious little children. Half of them didn't even know why they were there! I no longer cared about myself, only my baby and the future he might not have.
One day I was in the NICU visiting Mark. When I went to stand up, I immediately saw the room go dark. The first time I opened my eyes I was lying on the NICU floor with a couple of nurses standing over me saying "oh no! we don't do big people!" The second time, there were LOTS of nurses standing over me. The third time I was on a stretcher on the way to the emergency room. Lack of sleep , not eating, and stress stress stress had finally taken its toll. I was admitted to the cardiac floor overnight for observation.
I went through a lot of conflicting emotions. Mark was my first child, unplanned, and I wasn't with the father. I was left to deal with so much of this by myself, and was so angry! Why had God let me get pregnant if I wasn't even going to have a baby to show for all the pain? Why was I feeling so detached from this little guy I'm supposed to love? I'm all he has in this world, and I'm sitting here thinking that this is all a big mean joke! What kind of a mother is that? I wanted to think he was beautiful. All I saw was a green bloated child with peeling skin, swollen eyelids, and a weird head. Thinking that he looked strange was very upsetting to me. After all, don't all mothers think their kid is beautiful?
It was rough, and his progress was at times questionable, but Mark made it through! He was in the hospital around a month and a half, and came home with a rigorous schedule of medications and a scar. He is now healthy, playful and adorable, and worth every bit of the struggle.
I've given this whole experience much thought over the past several years. I've discovered that when you are going through your most painful moments, it seems as if it will never end. Now I only wish I had noticed a little more so I could be sure these memories were perfectly recorded on my soul. They are the best memories of my life.
Links for info on medical conditions my son hasAlpha1 Antitrypsin Deficiency National Association: wonderful organization! become a member!
Alpha1 Foundation: research-oriented