Othello's Story

Waiting to live. That is exactly what Othello was doing. That is precisely what our entire family was doing. We waited for Othello to come out of surgery. We waited for him to be discharged from the NICU. We waited for him to get bigger. We waited on an organ transplant.

Othello was born with gastroschisis. His intestines had formed outside of his abdomen. It is a condition that occurs in about 1 in every 20,000 births. Most frequently in the first born and when the mother is under 20. Well, he was my second child and I was 23.

The pediatric surgeons explained to Darin and I that in most cases the gastroschisis is repairable. Othello would go back to the operating room and they would look inside to see if the intestines had rejuvenated. If all goes well, then he should go home within a few weeks.

At four days old, Othello was wheeled into surgery for the second time. Darin paced the room as I sat in a wheel chair, still in pain from my c-section. We waited anxiously for the surgeon to return and tell us Othello was going to be alright. But, that is not how things played out.

Dr. M approached us, with a blank look on his face. He explained that Othellos intestines were not salvageable. He had to remove his entire small intestine and the majority of his large intestine. Othello would be dependant on TPN for nutrients and would not live without a transplant.

My heart sunk. I had just given birth to this beautiful child. Only to have him stolen away from me.

Othello was in the neonatal intensive care unit for 2 and a half months. He underwent a few other surgeries for many central lines and a gastronomy tube. Every day we would sit by his bed, touch his hands, talk to him, and wish we were taking him home. Every day we would leave, empty handed. Our baby would be lying there, in a tiny plastic crib, in a room full of other babies.

We were not given much hope of him ever coming home. So, when he was discharged at 2 and half months, I was ecstatic! I rode next to my little Othello on the car trip home. I stared at his precious face and I felt tears welling in my eyes.

Othello was already jaundiced when he was released. His eyes were tinted yellow and his skin matched. His liver was already feeling the effects of the TPN. This necessary evil that was killing him was keeping him alive!

Day after day Darin and I followed the same routines for Othello. We had mastered feeding Tubes, TPN preparation, and central line dressing changes, among many other things. I became versed in medical terminology that I would rather not know.

Othello was oblivious. He had only known this life. A life hooked up to IV poles and being poked at by men and women in white coats. He vomited daily since his little body could not handle the 5 ml an hour of formula he was g-tube fed. His bottom was always broken down from the constant diarrhea. But, he rarely cried.

Othello would smile and giggle. He loved to be held and sung to. Othello even fell asleep with me nearly every night. I would read him a bedtime story and he would nuzzle up in my arms and fall to sleep. I affectionately named him Mello Yellow Othello, because of his laid back demeanor and yellow skin.

At four months old, Othello was put on the list. His liver was already failing, his spleen enlarging, and he was not gaining weight as well as the doctors would have liked. So, we waited. Typically the wait is 6 months, we were told. But, since Othello was so small, they wanted the donor to be a newborn. To make it even more difficult to find a match he needed 5 organs! The odds were stacked against him.

We rarely left the house, unless it was for a doctor visit or hospital stay. I kept him isolated from people. I was scared he would catch a bug and get more ill than he was already. I did not want to add any pain or discomfort to his life.

Othello returned to the pediatric ICU when he was 8 months old. He was vomiting blood, needing transfusions nearly every other day, and not doing well at all. When Othello was admitted to the ICU, he was placed at the top of the list. He was placed as a status one on the UNOS list. The transplant coordinator said it is usually a week or two once they get this high on the list.

Othello had more waiting to do though. He waited and deteriorated. His breathing became labored. His giggling subsided. His smiles were few and far between. A month and a half after being admitted to the PICU, it was time to fly to the transplant center, 6 hours away, to wait there.

Othello and I got on a plane and waited to land in Miami. It is only an hour and a half flight in a prop plane, but it was a long hour and a half.

Othello waited in the PMSCU at Jackson Memorial. We watched him go for worse to even worse. I did not expect he could get any less like himself. His belly ballooned even more. His spleen and liver were so enlarged and hard that he looked as if he had a Buddha belly.

Four days of waiting in the PMSCU in Miami. We knew that Othello was not doing well. He required oxygen and still more transfusions.

At 9 a.m. on April 9 we received a call at the Ronald McDonald house. The transplant coordinator told us they had possibly found a match. We needed to get to the hospital and spend time with Othello. They would know within a few hours if all the organs were acceptable.

I went to Othello. I talked to him, looked at him and prayed that this would not be the last time I would see him. Hours passed waiting for word on the donor organs. A little after noon the transplant surgeon called me in the PMSCU. He explained that this would be Othellos best chance. He did not think he could wait any longer. The donor organs were a bit large, but this was Othellos one shot.

At 6 p.m. the organs were in route to Miami from Pennsylvania. They transplant team had gone out of the region to get the organs. At that time, I asked to hold my little boy. I was afraid I would never see him alive again. When I picked him up, he began to bleed. His G-tube site began to uncontrollably gush. I laid him back down and we applied pressure as we helped wheel him to the O.R.

Othellos smile returned. He began to giggle and play with the doctors gloves. It was very scary and calming all at once. I thought to myself: Othello is talking to the angels, he is going to pass.

Fifteen hours later, the surgeon called us. He said Othello would be out of the surgery soon. Things went well. They modified the new liver, and in addition they gave him a spleen, pancreas, stomach and small intestine. He did have a cardiac arrest on the table, but, this is normal when the fluids from the transplanted organs start flowing through the body.

When I finally saw my baby, he was a miniature sumo wrestler. He was swollen and hooked to all sorts of machines and medications. But, now he had a chance.

Othello waited for a few weeks in the ICU. He waited to get off the breathing machine, he waited to get his abdomen closed, and he waited to get weaned off of medications. He experienced a few setbacks. A little too much medication, his abdomen ripping open, medication withdrawal, but nothing he could not handle.

Two months post-transplant, Othello was released to outpatient. HE was doing well. There was no sign of rejection and everything was in working order. So now, we would wait a week or two more to go HOME!!

Two days before his first birthday, Othello was allowed to go home. We got on an airplane and waited. But, the plane had some problems and had to return to the Miami airport. So, we had to wait some more. Eventually we got home though. At 11 p.m. on the 21st of June we arrived home.

This is not the end of his journey by far. In September of 2003, Othello was diagnosed with Graft Versus Host Disease (GVHD - when the graft (new organs) attacks the host(othello)). He was admitted to the hospital and given a powerful drug that is used to fight leukemia. (Campath). We were told this had never been used to treat GVHD before - But, it seemed better to go for the unknown instead of the poor results of past treatments.

He beat the GVHD within 48 hours - so we thought. Just a few months later, In January of 2004, Othello was back in the hospital receiving the medication a secind time. This rare effect of organ transp[lants was beaten TWICE by Othello and Campath.

The celebration was short lived. Within a couple of weeks, Othello was admitted to the hospital and sent to the Intensive Care Unit. Another live threatening battle! He developed severe aplastic anemia, his bone marrow was no longer producing the cells he needed to live. Othello required blood transfusions. On top of this - he contracted Salmonella.

Othello's little body was unable to fight this time - so the doctors and nurses fought for him. They used antibiotics and medications to keep him stabelized.

Othello was very bad this time - the outlook was not good. BUT - he pulled an othello!! His bone marrow kicked in and he was moved out of the ICU!!! Infection free and no longer aplastic!

This did not last long though. Unfortunatly, while in UMJMH, Othello aquired Rota Virus, and a few other illnesses. His stay in the hospital was nearing seven months when we came to the realisation that Othello was ready to be at total peace and not go through anymore.

We called in Peds Care, a division of hospice. They were wonderful in working with our AMAZING GI doctors from Nemours and us. We took Othello home and made him comfy. He got to spend his last few days at home, with no more poking, no more shots, no more uncomfortable procedures. Just loving arms and lots of hugs and kisses.

Othello died at 4 am July 1, 2004 as a result of sepsis. The infections that he aquired in the facility were too much for his precious little body to overcome. Othello died peacefully, in his own bed. Mommy and Daddy were there at home with him and he was finally no longer in pain.

Now, we want to spread the word about organ donation. Darin and I tell Othellos story to anyone who will listen. We have reached many people, through television, newspaper, word of mouth and the internet. Something about a baby receiving a 5 organ transplant seems to raise eyebrows! Anything we can do to help raise awareness and spread the word, we do!