Seamus' Story

Strong Hearts: Seamus' Story

It is Thursday. Seamus was born on a Thursday and transitioned on to "larger life" on a Thursday-with seven weeks between. He lived 7 weeks if you don't count from the time of conception. I do count from conception. Each moment was so precious with our son. At 17 weeks Seamus was diagnosed with Hypoplastic Left Heart Syndrome (HLHS). We had gone in for our second ultrasound.
It was a Level II ultrasound. We saw the blood flowing through him, and we saw he was a boy. We saw his bones and his grandmother's nose. We got lots of pictures. It was amazing.

	And we saw his heart. "Is there something wrong?" Brian asked. The technician had spent so much time looking at his heart. My own heart stopped. I felt myself drift away. How could he even ask? Brian looked
closer. "It will be alright," he said and he held my hand. The technician left for a bit, and then she returned with the doctor.

They both studied his heart. "You will need to see a cardiologist to be sure, but it appears that your son has HLHS." Hypoplastic Left Heart Syndrome?! I left for a good cry in the bathroom. The sympathetic looks from the nurses terrified me. When I came back, the doctor explained, "You have four choices. You can end your pregnancy. You can bring him home to die at birth-he would probably live a few days. You could do a series of 3 open-heart surgeries before the age of 2, or he will need a heart transplant. It is hard to get hearts."

The nurse offered hope. "I know a mother of a child with HLHS, she works here. Her son is 12 years old. Some of his activities are limited, but he is otherwise doing well." We stumbled shocked into the car for the two-hour drive home. I howled for my baby boy to live and we named him Seamus.

We decided upon the 3-stage surgery and the hope that Seamus would be one of the 85% who survive the first surgery and one of the 70% who make it to their fifth birthday. At the same time, we knew each day was precious. My pregnancy was complicated by pre-term contractions. There was concern that I might go into labor early, so we moved from a remote part of Maine to Portland, ME 6 weeks before he was due to ensure that he would get the medical care he would need at birth.

Those weeks in Portland were a gift. Friends helped us find a beautiful place to live on a lake. My job created work I could do from home. Brian found a temporary job at a boatyard. It was time all together, preparing for the anxious excitement of his birth. I loved playing lullabies and rocking Seamus in my belly. I wanted him to know them so we could comfort him with familiar music in the hospital. We had mid-day naps and meditations. We treasured each moment.

A week before Seamus was due, we learned that his surgeon would be gone. Rather than induce labor early, we chose to deliver at the Brigham and Women Hospital in Boston where he could be transported directly through a bridge to Children's Hospital Boston. Again, we were amazed by the love and support of friends. There was only very limited rooming arrangements available through the hospital, but we had two places to live near the hospital. Somehow in the midst of so much fear, we had an even stronger sense of the love that surrounded all of our lives.

Soon after arriving in Boston, there was more concern for Seamus. He did not pass the nonstress test and his biophysical profile was also concerning. This was not typical for HLHS babies. They are usually born quite healthy. It is several days later, when a part of the heart called the PDA shuts that they go into distress. I was monitored for part of a day and it was determined that Seamus would not be able to endure labor. "If there were a group of doctors looking at this case, would they all recommend a C-Section?" I asked. "We are a group of doctors!" they answered. So minutes later, I had an emergency C-Section.

I lay with my arms out under neon lights and about 10 people surrounding me and Brian at my head. I felt nothing in my lower body and Seamus was born. He was 18 inches, 5 pounds and 12 ounces. Brian left my side and held his son at last. I heard Seamus cry from the other side of the room. They immediately gave him the prostaglandin drip to keep the PDA in his heart from shutting, allowing him to partially oxygenate his blood even though the left side of his heart was not fully developed.

I got to Children's Hospital as soon as possible to see my son. He was small and so fragile. I wanted to hold him to my breasts and run away with him. We waited four days for his surgery.

When the day finally arrived, we surrounded him with our arms and our love and baptized him. The medical staff took him from our arms, but not our love. We watched him go down the elevators for his first surgery ("The Norwood"). We tried to do normal things like eating or talking, but nothing was normal. I had not breast fed my baby. I had not changed his
diaper. I didn't know his body. He had wires keeping him alive. He had survived on sugar water for 4 days. There was a bloody bandage on his arm. I was afraid of hurting him when I held him. I didn't know his cry. He was gone down an elevator and I didn't know if he would be back alive.

Seamus survived. "Looks good" said Dr. Jonus (his surgeon) in his Australian accent. We loved when he said "looks good" even when we knew things were not close to what we thought was good. His chest was left open because he was a small baby, and they needed to wait for him to take off fluid before they could "close" his chest. We counted each tiny cc of urine by the minutes and hours. Four days later, it looked as if his chest would finally be closed. "It will be my birthday present" I told Brian.

Just as we were about to leave for the hospital we received a call. They said, "Come right away, Seamus is having trouble." We ran to the car and suffered through Boston traffic. We were escorted into a waiting room, expecting to be told he had died. They said, "Seamus' blood pressure suddenly dropped. We had to put him on ECMO. This is a machine, kind of like a heart and lung machine, which pumps and oxygenates blood through the body. This is not good. Call your friends and family."

We finally were able to go back and see him. There were two large ECMO tubes going into his chest. He was unable to move. "You have to be strong. He needs you," his nurse, Kim said. We tried to be as strong as our boy and sat by his side for five long days while he was on ECMO. I will never forget the morning he came off. When we came back we saw his hair had been washed. It was blond and fluffy like Brian's. He was clean and so were his bed-sheets. Our spirits lifted, we started to hope for the next hurdles; return of his kidney function, and decreased swelling so that his chest could be closed. Day after day we counted the few cc's of urine.

Seamus began to swell beyond recognition. I wondered what my son looked like-really looked like as a healthy boy. "Seamus has a capillary leak, he is very ill," they explained. "He is comfortable" they assured us. "Babies need to be comfortable to heal." So they gave him more morphine as he lay so still from the paralytic with his chest still open. Seamus could not move. How could we know whether he was comfortable?

We rubbed his hands and his feet. We caressed his head. We read him stories. We played the lullabies he knew in utero and we watched and hoped and prayed. We treasured each moment at the bedside with him.

Finally, Seamus needed surgery to place a PD Catheter in his belly for peritoneal dialysis. This time he was too sick to go down the elevator. We left him with the surgeon at his familiar bed-space and waited--trying again to do normal things while nothing normal was happening. And again! Seamus survived. We began to count fluids. Slowly, over days we began to see his features. He looked more and more like Brian to me. It was something about his eyes. He was beautiful. I took pictures everyday to record his progress.

While the fluid was starting to come off, Seamus' chest was still open and his white blood count was rising, so the decision was made to take the chance of closing his chest, although he was still quite swollen. We watched him go down the elevator a second time. Our arms once again aching and empty, trying to do normal things, when nothing was normal. Again, we wondered if he would come back to us alive.
Seamus survived again. Everyone was amazed by his strength. He was trying so hard for life. We rubbed his feet and hands, we caressed his head. We read him stories. And we hoped for

the day we would take him home to his freshly painted moonlight yellow room, and carry him across the field and down the hill to the water with our puppy, Joy.

After his chest was closed, the paralytic was finally lifted and I could see how he felt. I could hold him and look him in the eyes. I could see that rubbing his head was a comfort to him. What a relief to know that all that touching was a comfort to him. Some nurses had warned us not to over stimulate him.

I started to notice that Seamus was increasingly not able to be comforted. I could tell he was in pain. They increased his medications and we watched and hoped his kidneys would begin to function so that he wouldn't need the dialysis anymore. It seemed to me the dialysis was causing him pain. I could do nothing to comfort him.
Brian and I were just about to go for a walk, when we were asked to come back to the bedside. Bile had started to come out of his pd catheter. They did not know what had happened. They wondered if the pd

catheter had punctured his bowel. We were faced with the choice of doing nothing and he would most likely die from an infection, or doing another surgery. We chose hope again and handed Seamus over to the surgeons and he went down the elevator. This time we couldn't even try to do anything normal. We layed frozen silent together in the dark.

Seamus survived. We were astounded. The staff were astounded. Our little boy had survived open-heart surgery, ECMO, chest closure, peritoneal dialysis surgery and now exploratory surgery, an iliostomy and a new pd catheter. We hoped again and counted cc's again. By now most of the fluid was off. We had a chance to hold him. We bathed him. I put colostrum on his lips. We saw each other.
"I think he wants a pacifier," said Maribeth, his nurse. What?! It was something so normal. She carefully cut the pacifier to fit around his tubes.

At first he pursed his lips, as if he expected it to taste bad. Then we put breast milk on the pacifier and Seamus started to suck. It was so simple. Something so small was my favorite moment with him. He was content and comforted, and I had helped.

That was about 5 days before he died. Seamus had gotten another infection, probably from his iliostomy site. When I arrived to the hospital in the morning, there were people surrounding his bedside. Something had blocked his BT shunt (a small tube they had put in his heart during the surgery). Perhaps it was an infectious mass. Seamus had a blood pressure of 5. I held my son as the tubes were disconnected and his strong fight for life ended.

We are so grateful for the gift of our son. We chose hope for him, and that choice meant a very difficult struggle. It is our hearts now that struggle as we mourn his loss. With the support of friends and family, we still choose hope. We hope for our boy to be near to us and safe and peaceful in his transition. We hope for an eternal reunion. We hope for the chance to love and hold a child again. And we hope for the other babies with congenital heart defects and for their families. We all need such strong hearts.

Painting by Jane W. Carroll, grandmother to Seamus

Sculptures by Sue Carroll Duffy (on Thursdays) in remembrance of Seamus

Postscript: Sue and Brian Duffy welcomed Seamus' sister, Siobhan on October 6, 2003 and his brother Roy on November 9th, 2004