By Maria Demers “Everyone was praying for a miracle – that Melina’s heart would heal. The real miracle here was Melina herself. She was and always will be our very own little miracle.” ~Maria Demers Hello. My name is Maria Demers and I am married to a wonderful man named Robert. We live in a small town just outside of Ottawa, Ontario, Canada called North Gower. On December 1st, 2005 our lives were blessed with the birth of our first child, Melina. This is the story of her brief but very exceptional life. Rob and I were ecstatic to find out we were expecting back in April, 2005. Despite my age (40 years) we opted not to get any testing done to see if our child had any disorders. Our reasoning being that no matter what, we would not abort. I am a teaching assistant who works with specials needs children and knew that I would be able to take care of a special needs child should we have one. As a result, I had a wonderful and stress-free pregnancy – up until a few weeks before my c-section date when we found out our baby had a heart defect called Tetrology of Fallot. Our hearts were in pain but the doctors informed us that they are able to operate and fix this condition. On Dec. 1st, Rob and I went in to The Ottawa General Hospital for a routine ultrasound before I was to have my c-section on Dec. 5th. The doctors noticed a drop in baby’s heart rate and decided it would be best to deliver the baby sooner rather than later. We were a little freaked out (o.k. – I was a lot freaked out) but we were excited also that we would finally get to see our baby. We were informed that after our baby was born, she would be taken immediately into a recess room to access her heart condition, and then would go to Children’s Hospital right next door for immediate surgery. My O.B., after delivering Melina, came over to me shortly afterwards and informed us that she had a cleft lip and palate. Although we were saddened to hear this, we still were excited to be new parents. They brought Rob and I into a recovery room where we waited for doctors to come and speak to us. Then came the bad news. The doctor there told us that Melina showed all the signs of having a chromosomal disorder called Trisomy 13(full). She told us that Melina had a bi-lateral cleft lip and palate, that her left ear had not grown and there was no ear canal, that she had 6 toes on each foot, and that they didn’t think she had any eyeballs. This was all terrible to hear, but the worst part was when the doctor told us that her condition was not compatible for life. Any parent that has heard these words knows the feelings of devastation and despair that we felt at that moment. Melina was expected to live 1 -2 days, 5 – 7 at the most. At this point I still had not laid eyes on my child yet, and after all the things they explained were wrong with her, my husband and I were nervous as to what to expect. The picture we had painted in our heads was of this poor deformed baby. They finally brought her to us, all sorts of monitors and wires attached, and all we could think was – she’s beautiful and she’s ours. Rob and I both took turns holding her and crying. Then a priest came to baptize her. We were given a private room with lots of space for visitors. Our families were notified to get to the hospital because things did not look good for Melina. Family members arrived and the all over feeling in the room was of great sadness and mourning for the beautiful baby that was here but probably would not be tomorrow. Then tomorrow came and Melina was still with us, then the next day and guess what? Yup, still here. Suddenly our feelings of lost hope and despair turned into happier feelings. After I was discharged from the hospital, we decided to go with Melina to CHEO (The Children’s Hospital of Eastern Ontario) where they would give us a private room that we could stay in and never have to leave Melina. We ended up staying at CHEO for 5 days. She went from eating out of a syringe to bottle feeding in a few days and was up to 2 – 3 ounces every 4 hours. We finally felt comfortable in caring for our baby and then we decided that it was time to take her home. And that’s what we did. I remember when we brought her in the house and Rob put her on the floor in her car seat – I just looked at her and cried and told her that this was her home. Weeks, then months went by and Melina was doing really well. She went from weighing 4 lbs, 12 oz. to 8 pounds, 8 oz. in 2 months. Her feedings were going well and she was just like any other baby. We had a great Christmas and New Years with her – got to visit family and friends. Melina loved to be held and Rob and I made a point of holding her pretty much most of the time. She did like to sleep in her swing also, and was getting used to her crib. However, there were many a night when I or Rob would sit in the lazyboy chair, even overnight, and hold Melina in our arms – her favorite place in the world. Family and friends didn’t mind holding Melina either and there was never a shortage of volunteers to do this (especially Grandma & Nanny). Everyone wanted to hold her and everyone that did agreed that she was special. The funniest thing is that Melina actually grew 2 teeth out of the part of her gum that was on the outside of her mouth. First one came in, then an even bigger one. We were amazed at this and got a big kick out of it. Rob nicknamed her “Fang Jr”. (Growing up, he was known as “Fang”.) Eventually she knocked out one of the teeth, and the other became so loose we were able to twist it off. Besides one fainting spell, Melina was thriving. She didn’t even turn as purple/blue when she’d cry anymore and we had thoughts that perhaps her pulmonary artery had widened. We were having more difficulty with her feedings however in that she would be eating fine, then stop and start crying and we would have to comfort her and then try again to feed her. We thought it was simply gas pains. Then on Feb. 7th, things started to go bad. Rob sent me to bed and said he’d do Melina’s next feeding so I could get some sleep. Then around 2am, I heard Rob shriek my name. I woke up screaming as I knew that something very bad was happening. He shouted upstairs for me to call 911 – that Melina was not breathing. I did so while Rob started trying to resuscitate her. Thankfully, he got her back and she started to cry. They rushed us to CHEO, but after observing her, her doctor told us it might be better to take her home since there were many bad viruses going on that could kill her if she were exposed. We did take her home and stayed up all night with her as she slept. The next day, all seemed fine, except that she wasn’t feeding well. Then it happened again. Rob again tried to get her breathing while I called 911. It took longer this time, but he got her back again. This time they sent a helicopter to air ambulance her to CHEO. We drove to CHEO and when we got there, Melina was in Emerg. with her arms outstretched, face turned towards an oxygen mask – cooing and making all sorts of sweet sounds. It was obvious this child needed oxygen at this point. One doctor noticed that when she fed, her oxygen saturation went low. Melina was admitted, and Rob and I decided to go home and get some sleep and come back the next day. We never had left her before, but she was doing well with the oxygen. We came back the next day and Melina was still doing well. We went for an echocardiogram and were awaiting news about her heart and were hoping the news would be positive for a change. We stayed until midnight and then went back home. The next morning we got a call that Melina had had another spell and they had to resuscitate her again. We rushed into CHEO and met with her cardiologist re: the results of her ultrasound. Our suspicions about her pulmonary artery were right – it had widened and was no longer really the problem. The doctor then proceeded to tell us that Melina had cardio myopathy. Basically, the walls of her heart had thickened at an alarming rate from when she was born. Blood wasn’t getting into her heart like it should be and the condition would only worsen. Basically, short of a miracle, her condition was terminal. Rob and I (again) were devastated. It was like this child just wasn’t meant to be with us for too long. Again we had the terrible task of informing our families of the bad news. Melina stopped breathing 2 more times after this, and both times Rob got her back (with nurses and a doctor at his side.) After that, however, Rob and I had to make the hard decision to not resuscitate her any more. It was just too hard on her and we had to think about what was right for her, and not what we wanted. Her poor little heart was tired. We decided that it was time to let Melina go be with the angels. That day, Melina stopped breathing 3 more times, with Rob and I holding her, and she came back to us each time – without any intervention whatsoever. This was one strong child who was determined to stay with her Mommy and Daddy a little bit longer. Many visitors came through our hospital room. We were no longer able to bottle feed her so we decided to put her on an I.V. We also agreed to give her small doses of morphine to help with any pain she may be experiencing and to help relax her heart and help with her breathing. The next day, Melina had a wonderful day – no spells. Then, that night and into the next morning, after all the visitors had come and gone, Melina started to have her spells again. Each time we held her and told her it was O.K. for her to go to sleep – to go be with Grandpa. That Mommy and Daddy loved her more than anything and that we knew she was tired. I prayed that she wouldn’t be in pain or be suffering. Just when we thought she was gone, she would take a big breath and her heart rate would go back up. We knew what she was doing. She was preparing us for when she was to take her final breath. Rob wanted to take Melina into bed with him, so the nurse set us up and we all got into bed. Melina rested in my arms for hours until morning. She had a few more spells, and then Melina took her last breath. She died peacefully, with both of us by her side, Sunday, Feb. 12th, 2006 at 9:55am. Family gathered and were all able to hold and kiss Melina one last time. After everyone was gone, Rob and I bathed our little dolly for the last time. We dressed her in a beautiful knitted yellow outfit, held her more, kissed her more, and then said goodbye. Over 300 friends and family gathered at her funeral on Feb. 14th and listened to stories of how this little baby touched everyone who was fortunate enough to meet her – hold her. Rob and I are devastated by the death of our little Melina. She touched our lives in a way that we cannot explain. And although our hearts are broken and we long to hold her again, we take comfort in knowing that she is up in Heaven with Jesus – looking down on us with her new eyes. If we could do it all over again, we would not change a thing. We were only supposed to have Melina for a few days, but instead we were blessed with over 2 months. Everyone was praying for a miracle – that Melina’s heart would heal. The real miracle here was Melina herself. She was and always will be our very own little miracle. In closing I would just like to thank you for reading about our precious baby. If you are a parent who has a child with Trisomy 13, don’t be saddened by this story or lose hope for your child. Every Trisomy 13 baby is unique and no one knows what path they will take – only God. Just love your child every day that they are with you – with all of your heart. Back to Trisomy 13 You can read more about Trisomy 13 and receive incredible on-line support through the private message board on www.livingwithtrisomy13.org.
