ecmo-patient-stories

View stories from the loved ones of patients and patients themselves who were treated with Extracorporeal Membrane Oxygenation (ECMO) and Extracorporeal Life Support (ECLS). These emotional stories drive home the fear, pain and ultimate relief that many patients experience through life-saving extracorporeal support.

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Julian's Story

Julian's Battle with Group B Strep and PPHN

I had my son Julian on April 6, 2012. I was diagnosed with Cholestasis and Group B Strep, which resulted in me having to deliver my son prior to 38 weeks.

My son was born via cesarian, and when he was born, he contracted Group B strep and developed Pneumonia and Pulmonary Hypertension of the Lungs.

Julian was flown by helicopter to Georgetown University Hospital due to his condition almost immediately after he was born. The next day, my husband and I were notified that Julian would have to be placed on ECMO and that he had a 5% chance of survival. It was recommended that I try to get to the hospital to see my son.

I chose to voluntarily discharge myself from the hospital and my father and mother-in-law drove me to Georgetown University Hospital in the middle of the night. We agreed to place Julian on ECMO that night, and the first attempt was unsuccessful. Thankfully, the second attempt was successful, and Julian was on ECMO for three days before being taken off.

During our stay at the NICU, my husband and I tried to stay by his side as much as possible. We stayed at one of the rooms in the hospital there, and at the Ronald McDonald House. Julian developed a minor brain bleed while on ECMO and struggled with feeding for about a week or so.

It was the most traumatic and terrifying time of our lives. I was able to hold Julian for the first time when he was a week old. Each day, Julian’s health improved, as the wonderful doctors and nurses did their jobs to help save our son’s life. It was absolutely amazing to see the doctors and nurses doing everything they could to not only save Julian, but to help him thrive and to feel loved.

"It was recommended that I try to get to the hospital to see my son"

Amanda Shores (Mom)

The little things are what I remember most, like the nurses drawing a picture of Julian as a pirate to decorate his NICU crib, or the Build a Bear stuffed animal that was donated. This made me feel like more of a mother, like my baby would be okay and that there was hope.

I was able to successfully breastfeed Julian, and we were able to take him home three and a half weeks later. Taking Julian home was only the beginning of his journey. We had Infants and Toddlers come out to our home twice a week, and we went to appointments at the Development clinic at Georgetown University Hospital for the next two years. Julian graduated from the Developmental Clinic when he was about two.

Although it was a strange feeling, this was when we were able to start to let go of all the appointments, the worries, and just focus on raising our beautiful little miracle of a son. It was the beginning of my healing as a mother, and now Julian is an intelligent, amazing 8-year-old boy. He is doing fantastic academically and loves doing art and learning about animals. Julian is the sweetest person I know and is the kind of kid who plays outside and will bring me a flower once he is done playing. We went on to have another child, and Julian is the best big brother. We are more thankful than we could ever express. I try to live each day reflecting that and just loving our family, but we will never forget what Georgetown University Hospital did for our family. The doctors and nurses not only saved Julian’s life, but ours as well.
-Amanda and Jesse Shores