Marcella was born prematurely at another hospital in May of 2023. She had a fairly uneventful first month, until she developed Necrotizing Enterocolitis at 4 weeks. She had her feeds stopped, was put on the ventilator because her stomach was so swollen it was affecting her breathing, and IV antibiotics were started. But the disease had already progressed too far, and she continued to go downhill fast. Two days after the diagnosis she was transferred to the Nemours Children’s Hospital, Delaware NICU, and the following afternoon she had her first exploratory laparotomy.
Things were looking very bleak after this first surgery. Her intestines were put into a silo, basically a clear bag that held them outside of her body so doctors could visualize what the tissue looked like. Based on what they saw, it was very likely that she would not survive as all the tissue appeared to be dead. That night, we were told, “say a prayer to Saint Jude” and that we would have a very difficult decision to make. But when they went back in the next day for surgery number two, we got news that would change our lives forever.
The surgeons used something called indocyanine green dye, which is not typically used in this kind of surgery, but it shows where there is blood flow, which would be considered viable tissue. To the naked eye, it appeared that Marcella’s entire small intestine was dead. She was diagnosed with NEC totalis, which has a near 100% mortality rate. But this ICG dye showed that there was some blood flow left in a few segments of bowel, and there was enough left for them to save her!
They used a very unique technique to salvage what was left. No one on her medical team had ever seen it done before (many of them with decades of experience). They took the remaining segments and pieced them together on a Hickman catheter; essentially a thin tube with each end coming out of her abdomen. Those were disconnected from the rest of her GI tract, and we waited over 10 weeks for them to heal and regenerate.
Marcella had her reconnection surgery on September 14 at 3.5 months old. She remained in the hospital for another two and a half months as we had complications with excessive vomiting, bile backing up into her stomach, and inability to advance her enteral feeds. This whole time since 1 month old, she had been 100% dependent on TPN, or as her surgeon puts it, “cheeseburger by vein.”
Dr. Charles Paidas and Dr. Jo Cooke-Barber were the surgeons that did all her procedures. Since she was in the NICU for about six months, she was under the care of every doctor, nurse practitioner, and nurse there at one point or another. But, her primary neonatologist when she was undergoing all her surgeries was Dr. Elizabeth O’Donnell. Dr. O’Donnell, Dr. Paidas, and Dr. Cooke-Barber are not only excellent doctors and incredibly skilled in what they do, but they also helped us and our family through the most difficult time in our life and we developed a great relationship with them. They were supportive and comforting when we needed it most.
We also had two NICU nurses who joined Marcella’s care team, so they had her as a patient just about every time they worked. Having people that knew us and our daughter so well and trusting that they would take the best care of her was such a blessing given that Marcella was inpatient in the hospital for so long. It was a huge relief for us because they knew every detail of her case and we could trust them completely. Not to mention they became an extension of our support system, which is so important when going through something like this. We still keep in touch with them and see them eight months later!
Marcella’s gastroenterologist is Dr. Arieda Gjikopulli at Nemours Children’s. She first took on our case as we were transitioning out of the NICU, and we have continued to see her at clinic appointments at the hospital every six weeks. She is so knowledgeable and a great listener. She was always patient with us in the beginning when we had tons of questions and concerns, and she has been there to guide us every step of the way. Marcella will continue to go to these clinics for the foreseeable future because she has Short Bowel Syndrome because of NEC and all the surgeries. We don’t anticipate any more surgeries for her.
Marcella finally came home on December 8, 2023 after 196 days in the hospital. But our journey was not over yet. In February, they discovered she had a stricture (narrowing) at one of the connection points that needed another surgery to repair. So, she underwent her sixth abdominal surgery on February 22, 2024.
After a long, difficult road filled with many challenges and constant uncertainty, Marcella is now thriving! She still gets her IV nutrition overnight, but they expect she will be off it completely within the year, which is a huge success given how much intestine she lost. She gets formula through her g-tube, so feeding her looks a lot different than we ever expected, but she is doing great with it. Since she was not able to have anything by mouth for half of her first year, she is still learning how to eat and comes to the hospital for feeding therapy once a week. She is making a lot of progress and eating some solid foods now, which has been really exciting for us!
She has always been such a happy girl despite everything she has gone through, and she is the strongest person we know. Her surgery team considers her their “miracle baby of the year,” and she will always be our little miracle!
