Update: Surgery Six

Two days ago, on November 16^th , Kelsey was rushed into emergency surgery after having a heart catherization procedure done earlier that afternoon. During the cath it was found that Kelsey’s new mitra lvalve that was placed only 5 weeks ago, wasn’t working properly. The surgeon and other cardiologists were dumbfounded. Never before had they seen anything like this happen, especially, with a newly replaced valve just over a month ago. They had no idea what could have caused the valve’s malfunction. Nevertheless, they decided to balloon the valve to get it to function but were unable to do so. Shortly upon finishing the procedure, the surgeon came in and told John and Lisa that Kelsey was bleeding internally and he didn’t know where the bleeding was coming from. He said she needed to be rushed into emergency surgery and they needed to locate the source of the bleeding and that her new mitral valve needed to be replaced. John and Lisa were in complete shock. They had just seen their baby girl prior to the cath and she was playing around in her crib. This was beyond their biggest fear. Never could they imagine that their little Kelsey would have to undergo yet another open heart surgery.

Shortly after receiving this devastating news, John and Lisa were asked to say goodbye to Kelsey as she was going to be taken down to the operating room. When John and Lisa entered her room there were swarms of doctor’s all around her. Kelsey lay still and pale on her bed. She was intubated and her belly was extremely distended. As nurses were hanging blood transfusions John and Lisa touched her and kissed her goodbye. Thoughts of how she could possibly make it through one more surgery kept passing through their minds. Kelsey’s tiny little body at only 14lbs had been through so much, could never endure what lied ahead.

Kelsey went into surgery at around 4:30pm. About an hour later, the liaison came out and told John and Lisa that the internal bleeding had stopped and that the surgeon was going to proceed with the open heart surgery. What wonderful news that the bleeding had subsided however, the worrisome, long wait began for an all too familiar surgery. Visions of baby Kelsey’s body with her chest opened up again, more chest tubes and the possibility of coming up on bypass, kept entering their minds. The liaison updated them every hour thereafter as to how the surgery was progressing. For 6 hours, John and Lisa waited with anticipation. Would Kelsey be okay? Would her heart be able to beat on its own? Finally at about 11pm Kelsey’s surgeon walked in and told the family the surgery was finished and Kelsey came off bypass without any problems. A huge sigh of relief filled the room. The surgeon said he was able to replace the mechanical mitral valve with a tissue valve without any issues. Three more hours would go by before John and Lisa were allowed to see Kelsey.

At 2am, John and Lisa headed down to Kelsey’s room in the ICU. There she lay hooked up to the ventilator, 12 pumps, chest tubes, and an IV placed into her scalp. Kelsey looked pale and lifeless as her fight for life began once again. John and Lisa sat by her side and held her tiny little hands and whispered words of strength in her ear as doctors and nurses surrounded her bedside. The rest of the ICU seemed quiet but Kelsey’s room was brightly lit and full of anxiety. There was much concern because her heart rate was in the 180’s and considered extremely high. She was carefully monitored all through the night. About 12 hours after her surgery, Kelsey went into atrial fibrillation so they had to reset her internal pacemaker. As the day progressed, Kelsey grew extremely fluid filled and puffy while her heart rate continued to sit in the 180’s.

At this time, Kelsey remains very critical. Her blood pressure keeps fluctuating, her heart rate continues to be elevated and she keeps having these heart atrial fibrillation rhythm issues. The doctors are saying she’s just been through too much in such a short amount of time. That it will take a while for her little body to recover. All the while, John and Lisa have been right by her side, praying and hoping for yet one more miracle.

Surgery Number 5

On Friday, October 8th, Kelsey was removed from the bypass machine that had kept her alive and on Monday, October 11th, Kelsey's chest was finally closed. She did remain, however, on an external pacing device, her heart was in complete block and unable to pace itself. Another week would go by with no improvement. Kelsey’s heart wasn’t responding. As devastating as one could imagine, the decision was made; Kelsey now needed a permanent pacemaker inserted. This meant back to the OR, back on the ventilator, back on the paralytic drugs and yet once again, opening Kelsey’s tiny little chest incision. The operation was successful, but so fearful of infection, Kelsey’s surgeons kept her on three IV antibiotics.

Kelsey has been on so many drugs, she’s not the vibrant, active 16 month old, they once knew. John and Lisa haven’t seen their little girl smile or laugh in over a month. They have not left the hospital in all this time, months of stress, anxiety and disappointments. They have been Kelsey’s advocate from the very beginning. They have stayed strong for her. Even when they feel like they cannot go on any longer. When they want to give up, when they are just too tired and exhaustion takes over their bodies and minds. They just look at this precious little girl who is their prize fighter. Kelsey will not give up, and they are her biggest fans!

Kelsey's 4th Surgery

On Tuesday, October 5th, a smiling blue-eyed Kelsey made her way to the operating room again.  Her surgeon felt confident that her heart had grown enough to fit the smallest mechanical valve that was available.  A tiny valve measuring only sixteen millimeters. After ten hours of surgery and with a new mechanical valve in place, the cardiac surgical team prepared to take Kelsey off the heart lung bypass machine. After ten hours of surgery and after three open heart surgeries in four months, Kelsey's heart failed to start. The surgeon said her heart was “just too tired.” It was decided to keep her on ECMO (which is similar to bypass, in which it mechanically does the job that the heart and lungs do but are unable) for a couple of more days to give her heart a chance to rest. Kelsey was placed in a medically induced coma and everyone held their breath as they watched Kelsey fight for her life. 

Once again, John and Lisa feared for their baby’s life. The day after her replacement valve was inserted, her heart continued to bleed and wasn’t healing. The tiny child lay in the ICU with her chest left open and visible from the surgery. She was on a heart lung machine, and her blood everywhere. The baby had tubes coming out of her everywhere. Some tubes were filled with blood draining from her chest. Others were transfusing her just as quickly as it was coming out. Blood was trickling down her little arms that didn’t get to clap on her first birthday, running down her legs that hadn’t taken their first step yet. It was a horrific sight. She lay with a thin layer of gauze protecting her open chest hooked up to a machine that was doing the job that her tired little heart just couldn’t do anymore. The surgeons came into the ICU to attempt to locate the vessels that were bleeding, right there at her bedside. After hours that seemed like days, the surgeons approached the terrified parents this time with good news, they located the bleeding vessels and sutured them. The bleeding had finally stopped.

Surgery Number 3

John and Lisa were absolutely devastated by this situation.  They were completely exhuasted and felt so helpless and defeated.  June 17th was Kelsey's first birthday.  There were no balloons, no cake or birthday songs.   All of these things were robbed from her as she struggle to survive.  Quite late that night as everyone watched the frail little child breathe, in walked in the best birthday present Kelsey could ever get.  An renowned pediatric cardiac surgeon, who was a specialist in Kelsey's valve condition.  Within minutes, Kelsey's third open heart surgery was being planned for the very next day.

Kelsey’s parents were told that she needed a valve replacement but she was just too small, too frail. The goal of this surgery was to save her tiny valve that measured only 9mm. She needed to grow, her heart needed to grow so a replacement could be done, maybe in two years. The surgery was described as “much more of a risk” due to her tiny nine pound size. She was so fragile, so depleted of nutrition, her body not having the opportunity to replenish itself. Her post-op course would be longer, harder, and more complicated. John and Lisa stood by her side, never leaving the hospital. After 62 days, Kelsey was again discharged home, her valve thought to be repaired. Kelsey went home after her third open heart surgery, more depleted of nutritional resources than ever. Only home for forty eight hours, Kelsey was unable to sleep nights, unable to tolerate any of her feedings and vomiting. Her oxygen level dropped and she turned blue. Completely terrified, Lisa and John dialed 911. Kelsey was rushed back to Children’s Hospital where a catheter was inserted into her heart to try and save the struggling child. The increased pressure caused the valve in her heart to tear. Her valve was damaged beyond repair. Kelsey would now need a fourth surgery. However, this time she would need a complete valve replacement.

Kelsey's Second Surgery

On April 26th, only two weeks later, Kelsey's second surgery performed to fix her tiny heart. The family again faced the operating room nurses with more tears, more hugs and more prayers. Their tiny angel was once again in the hands of the surgical team at Children's Hospital.  After another long day in surgery to fix her leaky and stenotic valve, the operation was thought to be successful. Over the next few days, her parent's stood vigil.  Day and night, Lisa and John never left Kelsey's side. Every day they would hold, touch and caress her little fingers, always whispering familiar words into her ear, telling her to be strong and know that Mommy and Daddy were right there. This recovery was more difficult for Kelsey and she needed to have a feeding tube placed to help her depleted little body heal. After weeks of recovery, Kelsey was finally sent home with happy expectations. However, quickly after arriving home, it was evident something was very wrong. Kelsey wouldn’t eat, couldn't sleep and wasn’t gaining weight. Again, she began to have trouble breathing. After two heart surgeries it was back to the hospital. Happy expectations were soon replaced with worry and despair.

Kelsey's First Surgery

With all the emotions of young parents - fear, anxiety, hope - John and Lisa handed their baby into the arms of the cardiac surgical team at Boston Children’s Hospital on April 5, 2010, the day after Easter. After nearly eight hours in surgery, the news following her operation was not the news any parent would want to hear. New words were used; "complicated, tricky, and unique." Kelsey would need more surgery and she wasn't going to survive without it. The doctors, with compassion, urged Lisa and John to take their baby home and "enjoy her for a week." However, she never got to go home. No balloons or welcome home signs. Eight hours after being told she could go home, Kelsey lay limp in her father’s arms straining to breathe. She was transferred to the ICU in pulmonary edema.

Life is Precious and Not Always Easy

Kelsey Corltio was diagnosed with an atrial septal defect at birth, a condition that is usually mended by one "simple and easy" procedure, a "3-4 day hospital stay." There has been nothing simple and easy about Kelsey's condition, Kelsey has undergone a series of corrective surgeries, including two mitral valve replacements, multiple cardiac catheter's, internal bleeding, pulmonary edema and countless hours of fighting for her life. Kelsey has been on an external pacing device, a ventilator for days at a time after each procedure, multiple paralytic drugs and at her worst, hooked up to a heart/lung machine that kept her alive for four days after her 4th surgery when her little heart was too just too tired to start again. Her tiny little incision has been opened and reopened, again and again. She now has a tissue valve and permanent pacemaker, both will need to be replaced at some point down the road. Kelsey has battled more than what anyone should have to endure in the course of a lifetime. And Kelsey is not even 2 years old yet.