You look back on who you were fifteen years ago and wonder where you found the strength. You see the mistakes of a young mother and understand the person you have become. In celebration of Marielle’s 15th liver transplant anniversary on St. Patrick’s Day, I thought I’d share the letter I sent to her liver donor’s mom which I wrote 15 years ago…just 9 months after Marielle’s liver transplant.
Published December 1994; Re-edited March 2009.
Dear Special Mom:
I have spent many nights thinking about you and wondering how you are doing. I was told that your daughter was a year old and that she had neurological problems. The transplant coordinator told me your daughter had a severe stroke which left your little angel with no brain function. I do know know if this information is true. I do know that you made a decision to donate her liver and give my daughter a second chance at life. I will be forever grateful of your decision to let her live on in my daughter. Here is our story:
Please Don’t Take My Sunshine Away
I have put off telling our story because it brings up a lot of pain and other unwelcome emotions. Those I thought were in our corner have disappointed us, while those who we never expected to, came through like never before. I used to wonder why we were chosen to face the impossible, but now am comforted with the answers I have found.
Our story begins on a rainy Friday morning in June of 1993. My husband, Ron, was present for the birth of our daughter, Marielle Lynnaire, by caesarean section. Marielle was put in a high risk nursery for a week, because of my pre-existing condition (Lupus). Shortly thereafter, she was given a clean bill of health and we brought our little sunshine girl home.
I look back and think how comical it was feeding Marielle a 6-ounce bottle every hour or so and changing more than 2 dozen diapers a day. My friends remarked, “You wanted a baby,” as if this was normal. I complained to her pediatrician on numerous occasions, but was treated like a nervous “new mom”. At one point I asked him why her stomach was so large. He remarked, “All babies have big stomachs.”
At 10 weeks old, we christened Marielle. She was dressed in a bright white gown which made her complexion appear almost green. Within the next 24 hours, when she developed a bad cough, I took her to our local hospital where she was examined by an intern. He indicated that she indeed had a slight respiratory infection, but was more concerned with her severe jaundice. The intern ordered blood tests and insisted Marielle be admitted immediately. All the doctors were undecided about her diagnosis, but mentioned that in the worst case, she could have biliary atresia. I knew, at that moment, it would be bad news. You see, when Marielle was born with all of her limbs, I was so relieved, because I thought that my Lupus would deform her (although my doctor assured me it wouldn’t). My worst fears were now becoming real.
After 9 days in our local hospital, I transferred Marielle to a children’s hospital in Pennsylvania where I heard a doctor had recently split a pair of Siamese twins who shared a liver. I was determined to get her the best care, no matter what, and this seemed like a good start. Once there, a Kasai procedure was performed and we learned the devastating truth about biliary atresia. Our surgeon told me to take one thing at a time, but I knew that I had to start planning for her transplant. We went home for a few days only to return to the hospital because of fevers.
Marielle had developed ascites 2 weeks after her Kasai procedure. No one would tell me, but I knew that it was the beginning of the end. Marielle would spend most of the next 4 months at the children’s hospital. She had developed an infection in her liver which proved to be resistant to the strongest antibiotics. Our doctors agreed that a transplant might be the only way to rid her of this infection. In desperation, we flew Marielle to a mid-west hospital for a possible living-related transplant (they had done the first living-related liver transplant in the U.S.). Miraculously, her infection cleared en route to Chicago. Needless to say, we looked like fools. The doctors thought we were being a bit premature and suggested that we return in the Fall. They asked us to stay in the area so that they could provide a safety net, so we rented a furnished apartment (our hotel had no heat or hot water). At 35 degrees below zero, with a wind chill factor of 75 degrees below zero, it was the coldest winter in 14 years.
A week later, Marielle developed bleeding varices. The attending doctor told me that there was nothing they could do unless Marielle experienced severe bleeding. This puzzled me, so I contacted all of our doctors back on the east coast. They advised me to bring her to the Chicago ER immediately. I rushed her there where the ER team attempted to draw blood with no success. They tried to draw blood from her broviac in her chest. Again, more failed attempts. They contacted the GI doctor on call. I was told that he would be to see us right away. Hours passed and no GI doctor. Finally, after 7 hours of waiting in the ER, I was told that the GI doctor was not in the hospital and would not see Marielle until the next day. My baby was screaming like never before. I had requested her special baby formula and a feeding pump. After 5 hours, the formula arrived, but there was no pump available. It was now 17 hours that Marielle had been without food. Knowing this and that a GI doctor would not see her, I knew I had to do something.
At this point, I made the decision (against the ER doctor’s advice) to disconnect the broviac line and book a flight back to Pennsylvania. Once back at the apartment in Chicago, the phone calls began. The Chicago GI doctor on call apologized for the misunderstanding of hospital policies. He felt that Marielle was not in danger, but he would have a bed ready for her (so that we would not have to go to the ER again) if anything was to change.
Later that evening, Marielle vomited her feeding tube. I immediately contacted the Chicago GI doctor and brought her back to the hospital. The next morning, my social worker (with whom I had only met once, briefly) informed me that she would be filing charges against me for removing Marielle from the hospital the prior evening. I knew that I needed to leave, because we could no longer work together. The next morning I was investigated by the state’s department of children’s services. The state workers seemed to be puzzled why accusations of medical neglect were filed since I had flown half-way across the country to save my daughter’s life. An assessment of my parenting skills was made and my choice for private home nursing for my daughter was made known (they frowned on that–instead wanted the mother to handle all care). I was labeled as “difficult,” because I wanted to see blood test results and review doctor’s notes. I was surprised to find that no other parents had requested this kind of information.
As soon as possible, we were back in Pennsylvania where Marielle was evaluated for cadaver transplantation. We returned home only to have her re-hospitalized. We were only back home 3 days when I received a beep on my pager. I joked with my nurse that it could only be one of two people; the pager company, because my husband forgot to pay my $12 monthly service fee, or our transplant coordinator. I looked down at the number and began to scream with joy. I could not dial the telephone fast enough. Our coordinator was calm and apologized for not seeing us during Marielle’s recent hospitalization. She said she wanted to make sure Marielle was doing well and that she was without fever. I assured her everything was fine and that I thought that a liver had become available when I received her beep. Our coordinator then told me that indeed a donor liver had been found for Marielle. I started to cry…I was just so happy.
We arrived at the hospital late that evening and said our prayers. Thoughts of losing Marielle became real for our family. This might be the last time we put our baby to sleep. The next morning was St. Patrick’s Day (March 17, 1994). It seemed like the perfect day. See, Marielle was named after her paternal Italian grandmother, Mary. The meaning of Marielle in Italian is Little Mary. We always joked that Marielle was green, because of her Irish decent on my side of the family. It was now the luck of the Irish that would help Marielle come through her transplant with flying colors. When our surgeon (who now practices law) removed her old liver, our coordinator brought my husband and me into a room to view the organ. There was not a pink spot on it. It was large and dark green with spots of black. Surely, no one expected her old liver to look this bad. During the surgery, all I could think about was the other mother…the mother who made the decision that her child should not die in vain…that another child could be saved with the gift of organ donation. To this day, I pray for this special mother.
While waiting for progress reports, we visited the gift shop where I came upon a funny looking blue stuffed elephant. I pulled his trunk and the melody, “You Are My Sunshine” played. This was the song I had sung to my daughter since she was born. I bought the elephant to comfort her when she returned from the operating room. This silly elephant was a sign for me that everything would be okay. Marielle’s transplant lasted only 6 hours. She did extremely well. Marielle’s maternal Irish grandmother even joked that all of her friends were calling my daughter , “Marielle O’Carroccio.”
A few hours later, we were allowed to see her in the ICU. No one could have prepared me for the post-transplant days; the tubes and machines were overwhelming. I remember my father counting more than 17 tubes, IVs and other connections. Marielle tried to cry, but the artificial airway that was placed in her throat prevented us from being able to hear her. To hold her proved to be too painful for Marielle. My husband and I felt so helpless. A few days later, she was moved to the post-transplant unit where she went into rejection on the 7th day after receiving her new liver. The surgeon was waiting for me when I arrived at her room that evening. Her liver had clotted off and emergency surgery was performed in hopes of saving the graft. I had thought that we were on safe ground when the rug was pulled from underneath us. I didn’t know how much more Marielle could endure, but corrective surgery for portal vein thrombosis was successfully performed. A week or so later she had a mild bout of rejection and was treated with IV steroids. All seemed to be going well until the doctors became concerned with Marielle’s poor weight gain. It would be another month or so before this problem was resolved.
Finally, on May 17th, 1994, exactly 2 months after her transplant, we began our trip home. My husband took Marielle in our car and I drove my father’s truck with all of our belongings. We were no more than 20 minutes from home when another driver hit my rear tire. This caused the truck to spin around and flip over more than 6 times. I knew I was going to be all right. I knew God would not take me away from Marielle. He knew that only I could give her the care she needed. It was my seat belt that saved my life, but I still spent a week in a trauma unit, because I sustained broken ribs, a fractured sternum, a punctured lung, and numerous other injuries. I was lucky to be alive.
Now, it is 8 months later and I know that I have been blessed. It is for this reason that I have dedicated myself to helping others in their journey. I now know why my husband and I were picked to be Marielle’s parents.
This Christmas will be a very special one. Our family is together again. Our journey has brought all of our family closer. May you all have a special holiday season and healthy New Year.
(Note: Names and places were omitted in original letter to donor’s mom to respect anonymity.)
(Side Note: Notice pacifiers in many of the photos? Marielle could have done that TV commercial where the mom is driving and the child drops the pacifier, so mom has to pull off the road to find it in the car to calm child…LOL! She would have two pacifiers clipped to her shirt, a pacifier in each hand and another in her mouth. Seriously.)
A Week of Celebration
Originally we were hoping to have one of our big shindig with 200 people to celebrate Marielle’s 15th liver transplant anniversary. But the truth is I just couldn’t get such a large party together in such a short time (our annual BBQ this Summer will have to suffice). Anyway, we did celebrate by dining at Trattoria Romana. I know–we spent St. Patrick’s Day at an Italian restaurant…LOL! But it was where Marielle wanted to go, so we did.
And since it’s all about friends when your 15 years old, Marielle and her crew got taken by limousine to The Palm in NYC tonight.
Luckily our dear friend, Albino, will keep an eye on the girls so they don’t get into any trouble.
And then they’ll continue the party tomorrow as all the girls are sleeping over. Guess I’ll be getting lots of Hotcakes and Sausage from McDonald’s in the A.M.
I’m feeling pity for the unfortunate limo driver who has to deal with all the girl chatter tonight. Hope he brought earplugs with him!