Wind Beneath Our Wings

heart and flowers

 

Keith and I had our first child together, our daughter Megan, on February 26, 1990.  After three weeks, we discovered she was in congestive heart failure, she had an enlargement of her heart called Cardiomyopathy and she was put on many different medications, to help her heart, beat efficiently.  When she was only 7 months old, however, she suffered a massive heart attack and a stroke, and that was when we were told that she needed a Heart Transplant. Those words echoed to our very core, we knew how difficult it was to get a donor heart for an adult, but a child!!!  We were terrified, to say the least, but we were on a mission.

They transferred her to St Christopher’s in Philadelphia, where they put her on the Transplant list, right away.  However, 3 weeks later they took her off the list! We were stunned!!! THEY decided that as a result of her stroke, they considered her a vegetable and that she would not walk, talk or see again.  THEY felt that her quality of life would not meet their expectations for her to receive the heart! The next day we left the hospital and undaunted, we got a physical therapist that worked with us to get Megan physically and mentally strong so we could reinstate her on the National Transplant List.

Four months later, we brought her to Columbia Presbyterian in NYC and met Dr. Linda Addonizio, the Pediatric Cardiologist.  She ran a series of tests and determined that she was a perfect candidate for a Heart Transplant! They put her back on the list, and she was immediately listed as the Number One child in the country.  Now the wait…we knew that another Mother and Father would have to lose their child, and be willing to donate their child’s organs for Meg to live. The horror of that was overwhelming!! We waited nearly a year, and when Megan was 18 months old, the call finally came…

On Friday, September 13, 1991, I had gone to a local business called ABB Lummus, in Bloomfield NJ. They had raised money for Megan, (through a fund that was started by our friend Scott Harvin) and asked me to come with Megan and meet everyone.  We stayed about an hour when I got this sudden rush over me to go home. I told Catherine Loreto the woman that organized this event, I must go home – Now! I was not in the house for 5 minutes, when I got this call. It was Dr. Addonizio, she asked me how Meg was doing, and what was I doing, and I told her we just came home because I had an overwhelming feeling that she was going to call me.  She said that my instincts were right – “We have a heart, are you ready.” I started crying – all of a sudden I didn’t want the heart. I was not ready…I now feared the surgery…I wanted to tell her…”We can wait for the next one”. I knew; however, this is the only one, I asked her, how long before we need to be there, she told me no more than 2 hours!

There were no cell phones back then, Keith was on his way home, and he would not be home for an hour…OMG!!!  I was crying for joy and fear at the same time. I made all my calls, to my sister Kathleen, cousin Laurine, and my parents, some friends, and Scott, with each call I was barely able to get the words out…When Keith finally got home, I remember waiting at the door for him.  I was crying, and he came running up not knowing why I was crying. “It is here, the Heart is here!!” We just hugged and cried, saddened for the mother that just lost her child but at the same time strangely elated.

Megan was The 1991 NJ State PBA Poster Child,  so we got a police escort to Columbia Presbyterian.  It was 4:00 pm on a Friday afternoon, normally it probably would have taken two hours to get there, but we got there in half an hour.  When we got to the Peds Cardiac Unit, they took Megan right away to do the final testing to make sure everything was a match. The only thing we were told was that the heart came from a three-year-old boy from Long Island.  Megan was in a great mood, Keith’s brother, Randy and his wife Joyce, joined us at the hospital. The doctors gave us a room so we could spend some time with Megan, before the surgery. This was such a great time, we were having so much fun with her.  The Drs told us that she was physically ready for the surgery, she was strong and in “good” health that they felt she will do great. It was now midnight, we were very happy that the surgery was not on Friday the 13th, even though I am not a superstitious person, we wanted all the luck on her side.

The Drs came in and told us…it is time. All of a sudden, there was this fear that was gripping us, they let us take her down the hall to the Operating Room entrance, when we placed her on the gurney, she started to cry as they wheeled her away, and the doors closed, we could hear her cries as she was being wheeled into the OR.  Keith and I just held onto each other and sobbed. At 2:00 am, they told us that surgery had begun, and for over two hours we were making idle, nervous chit-chat, when Dr. Addonizio and Dr. Michler came out of these large swinging doors, they were practically floating on air. Dr. Addonizio had the biggest smile on her face and told us – she did great!!!  It was a huge success!! They are so happy, the hallway erupted with hugs and laughter. Keith and I couldn’t wait to see her, but they told us it was going to be quite a few hours before they would let us see her. They told us to go home and get some rest, but rest, was not on the agenda, packing and getting ready for a long stay at the hospital was.

We got back to the hospital at around 12, they still were not ready for us, but it would not be for long.  They started to prepare us for what we were going to see, even though I had read a lot of literature on the surgery and had seen many hospital shows I thought that I was fully prepared.  I was not!!!!

As we got close, we could see the ventilator and all kinds of machines. Her bed was actually facing with her head towards the door, so we had to move around the devices, and we did not see her at first until we turned around.  It was stunning!!! There on this huge bed was our beautiful tiny daughter, with all kinds of tubes coming out of her body. She was still heavily sedated, and I was grateful, Keith and I just started sobbing. The first thing we noticed was how pink her skin was.  She never had a pink complexion, it was always grey. Pink what a beautiful color!!!! We knew we did the right thing!

Dr. Addonizio came by to speak with us and told us that Megan was the most successful pediatric heart transplant in Columbia Presbyterian history, she was their 20th transplant.  My thought – 20 what a wonderful number….she proceeded to explain what the next few days were going to entail. Like what will happen when she wakes up, and how they were hoping to take her off all the machines, and out of ICU after 5 days if everything goes well.  At the hospital with us was my parents, my sister, and brothers, my cousin, and Keith’s brother and sister-in-law.

It took Megan a few hours to wake up, but when she did, she was still hooked up to the ventilator, but she gave me a stared down, as if to say, what the hell did you do to me?  Of course, Keith was totally immune to any of this, all she wanted was Daddy. Mommy was mean, look what she did to me. The doctors took her off the ventilator within a few hours of when she woke up…they wanted to make sure that her breathing was not labored, that would put a strain on the heart.  What a huge difference that made. Even though she was on pain medication, Dr. Addonizio said that she was not on heavy doses. She was in Pediatric ICU, so, therefore, we could not be next to her all night long, so Keith and I took turns going back and forth from the waiting room to her bed!! We kept checking on her to make sure this is real!!!

Well, Megan broke all records getting out of ICU, the doctors were so impressed.  She was on the Peds floor, by Monday afternoon. She was remarkable, she was so strong, she could hold herself up for long periods of time, and she knew that she was different.  Her whole right side no longer showed any evidence of the stroke. She was in her walker going up and down the halls on Tuesday morning, greeting all the other patients, there was no stopping her now!!

Every day, she would be getting stronger and stronger.  The doctors took tests every day to make sure there was no rejection or infection.  They really felt that she would be going home within a week. They were astonished, to say the least.  Then it happened, she woke up one morning with a fever. They immediately put her on antibiotics and took more tests, and you could see that she just was not feeling well.  On Saturday, September 28, my birthday, they gave us the news. Megan has a very rare infection, it is an infection that patients that have metal things implanted in them would get, such as a pacemaker. They could not figure out how Meg got this.  We asked them if they possibly left something in her, and they said no.

The next two weeks were very frustrating and exhausting.  I was sleeping on a chair that pulled out to a cot and Keith was down the block at the Ronald McDonald House in Washington Heights.  Neither of us was sleeping at all. Megan had good days and bad days. The doctors put her on heavy antibiotics to get rid of the infection, but it was a long process.  They finally told us on October 8, that she could go home the next day and they would give us the antibiotics and keep her on them for another 10 days. We were so thrilled that she could finally go home.  That we could all finally go home.

When we got there, we were greeted by all our friends and neighbors, they had a huge banner and a gigantic heart balloon for her.  We walked into our home for the first time in nearly a month, and we were elated.

Every day we watched as Megan was building up her strength, doing things that doctors in Philadelphia told us she would never do.  On October 17th, Keith and I were taking pictures of her, and for the first time, she started to walk, she was pushing her little shopping cart, walking around the house, and loving it…!!!!

That night getting her down was a little tough, because all she wanted to do was walk around the house.  She woke up at 2:00 am, and she seemed a little off, she just kind of looked at me in a very odd way. I asked her what was wrong, she started to moan, so I just cradled her and rocked her back to sleep.  

At 8:00 am, I woke up to a frightening sound, she let out a scream (Keith was already at work), I ran to her room and picked her up.  Something was wrong, terribly wrong, but I couldn’t figure out what it was. I called the Dr. and she asked me if it seemed like before, was she having a heart attack.  I said I didn’t think so, but I was scared, she told me to get here in right away. I met Keith at the hospital, and they took Megan away for a short time. They had us bring her to get a cat scan, and while we were waiting, Megan started to deteriorate, very quickly.  She was brought back up to the Peds Unit, the cardiologists were checking her in a separate room from us, all of a sudden we heard, Code Blue and I swear 50 Drs and nurses went running into Meg’s Room. It is now 3:00 pm, Dr. Addondizo, came out and told us that Meg went into Cardiac Arrest with 3 cardiologists right there and they were able to revive her. She told us that she was not sure what was going on with Meg, but she told us that her body is NOT rejecting the heart, because, despite the arrest, her heart was strong.  She went back into Meg’s room, and we did not see anyone for about an hour. When Dr. Addondizo came out again she gave us the shocking news that Meg had two more cardiac arrests and she is now in a coma.

The next 5 days are really a blur, I really don’t know if anyone of our friends or family, who came to the hospital will be able to recall much of it.  Megan was in a coma for the entire time. We were cat napping in the waiting room, night and day, and then on Wednesday, October 23, 1991, the nurse came out to tell us that they had isolated the virus that was ravishing her body and now they were bombarding her with heavy, medications.  There was a sense of relief – a little, she has been through so much…she is absolutely going to come through this…we have plans for her!!!!

All day was very tense and so ironic because it was a beautiful sunny, crisp fall day, but inside was very dark and getting darker.  At around 3:20 pm Dr. Addondizo came out crying, she said there is nothing more we can do…Megan has had 2 more arrests, and her body is shutting down, you need to come in and say goodbye.

Keith and I just hugged each other crying and silently walked into the ICU, immediately we were stunned at her appearance.  She was very bloated from all the fluids that they had pumped into her, to try and save her life, I went to one side, Keith to her other side. They had an oxygen bag over her, and the machines were all beeping.  Keith started whispering to her right away. I was kissing her head! We did not even need to discuss what we each did next, we just knew! I turned to Dr. Addonizo and said please stop, Just Stop! She looked at me and then I looked at Keith, we were hugging and kissing her, Keith had been telling her that it is ok to let go, we did not want her to fight anymore, mommy and daddy will miss her terribly, but we do not want her to suffer anymore!  As he finished the machines stopped, it was 3:30 pm! There was complete silence, except for the quiet sobs, from family, friends and the doctors and nurses. Our beautiful little girl, who fought for her life since the day she was born, got the heart transplant that she so needed was no longer with us! We were devastated!  She was 19 months, 27 days!

Many people have asked me over the years, she didn’t survive, was it worth it, would you do it again, would you have Megan go through with the transplant, knowing that it was not successful!  I tell them, in fact, it was so amazingly successful, our daughter got to live for 6 weeks, holding her head high. Walking when other doctors, told us she was a vegetable, and that she would never walk, talk or see again.  Through the selfless act of a mother who just lost her child, she gave our daughter Megan, the greatest gift of all – LIFE! It was the most successful pediatric heart transplant in the history of Columbia Presbyterian Hospital, at that time…She proved to them that, she absolutely deserved the chance, life was absolutely worth living, if even only for a short while!

That was 27 years ago today, and this is the first time I am grieving without Keith by my side.  On this day we always held each other a little closer!  We always visited her gravesite together, this is the first time that I will do it alone!  I do have some comfort however, I believe that Megan and Keith are together, and I would love to think they are with the little boy that saved her life, that gives me so much solace!

During the entire time Meg was here, the song Wind Beneath My Wings was the anthem for us, it gave us strength and courage to go forward every day, and after she passed, she became the Wind Beneath OUR Wings!