Alissa Rose Newiger

How do I begin our story when it is still so hard to believe? I guess we start at the beginning and hope it will somehow make sense in the end. I am still not sure exactly where the end will be as we continue to live this story each day. My husband and I were married for 8 years before having our first child, Jake. We tried for three years and with some medical assistance we were finally blessed with an adorable little boy. Becoming a Mom was an amazing experience and accomplishment. I felt my life had come full circle and everything just made sense. When you become a parent the love for your child is so consuming.

When we decided to try for a second baby we thought we would give it a go on our own. After two months off the pill I became pregnant. We were so excited and could not believe we had done it without medical assistance. Then a few months later we were told we would have a baby girl, what more could we ask for. I had a very normal and easy pregnancy. All of my ultrasounds and testing came back normal until the 35th week. At my 35th week ultrasound, they felt our daughter was small and not measuring appropriately for the 35th week. At that point, I really wasn’t concerned and just figured I would have a small baby. Jake was only 6lbs, he was born 5 weeks early and he was perfect. I was sent for a non-stress test and a Level II Ultrasound. A few days later I had the Level II Ultrasound and while in the physician’s office my water broke, however, they proceeded with the test and informed us that something was wrong with our daughter’s heart. We could not believe that at this point in the pregnancy we were being told this but I felt it would all work out. I was always a positive thinker and I was not going to change now.

On April 26, 2005, our beautiful daughter, Alissa Rose was born at 4lbs 4.3 oz and 17 inches long. She was one month early. I can remember Alissa coming out and not making a sound. I kept asking why she wasn’t crying. Eventually, she made a mewing sound and I remember saying that she sounded like a little kitten. Little did I know how true that statement would be. Alissa was taken to the NICU and placed on a ventilator. Several hours later we were told that she had holes in her heart, no anus and was dysmorphic. The word dysmorphic was the worst word we had ever heard and at the time we didn’t even know what it meant. To us our daughter was beautiful, cute and had a lot of family features. It would take almost two weeks to get the chromosome results. Alissa was diagnosed with Cri du Chat Syndrome, which is French for cry of the cat. We were told that only about 50-60 babies are born each year with this syndrome. She also had Tetralogy of Fallot, SVT, Respiratory Syncytial Virus, a Stridor, Apnea, Low muscle tone and Anorectal Fistula-Congenital. She also had an added piece on chromosome #5 and she was unable to hear. We knew our life would never be the same again and that our daughter would have a very difficult road ahead of her. When we consulted with a Geneticist he said that we must have a little fighter because it was amazing that she had come this far. He also told us that he could only find one other case in medical literature similar to Alissa’s diagnosis and those children did not live long. The medical opinion was that Alissa would not live more than two years. We were devastated by all of this. We searched the internet for more and more information and saw several children living with Cri du Chat Syndrome, however, the severity of the conditions varied so much. It was all very disheartening.

Alissa spent five weeks in the NICU. It was very difficult for us. I would go during the days to be with her and my husband would go in the evenings. We were so fortunate to have family and friends nearby to go with us to the NICU and to help with our son. Without our families and friends I don’t know how we could have gotten through all of this. Each day in the NICU brought something new. We had tried bottle feeding Alissa but it would cause her heart rate to increase and her oxygen levels to go down. Eventually, a video swallow revealed that she aspirated and we would not be able to bottle feed her. I think that that was one of our biggest disappointments because we had so hoped that she could be bottle fed and not tube fed. We ultimately made the decision to have a g-tube placed with fundoplication. We were led to believe that this would be more comfortable for her than an og or ng tube. On the day of her surgery for the g-tube we were on edge, I don’t think we believed she would make it through the surgery. She had a lot of respiratory problems, a large hole in her heart and she was very tiny. Amazingly, she did well during the surgery and after. For someone so petite she was spunky and feisty. Her stridor (squeaky sound) had actually gotten quieter. We quickly learned how to feed her and give medications via the g-tube. Unfortunately, Alissa often seemed so uncomfortable with the feedings. We hoped in time it would get better. It didn’t.

On June 3, 2005, we finally took Alissa home. We were happy yet scared. Alissa went home on an apnea monitor, which was more for our comfort. Eventually, we decided that the apnea monitor was not necessary as she was able to pull the leads off and the alarm would sound and send you into a panic. I think we were starting to accept that what was meant to be would be. Alissa saw every specialist out there and none of them were encouraging. Our biggest concern was that she was kept comfortable. We did not want her to suffer one bit. Our biggest challenge became the feedings. She was constantly uncomfortable and no matter how slow we fed her she would always crunch and squirm. We tried changing formula and giving her medications but nothing really seemed to work. She also had constant bowel movements. The food would go in and out it would come. Alissa would often have projectile bowel movements. She also refluxed terribly. It would bring tears to anyone’s eyes to watch this sweet little girl reflux and gag. I could tell how uncomfortable and miserable she felt. We spent months and months going to and from doctor appointments. We also had some experiences with the mic-key button popping out. We learned quickly after the first time that you need to get it back in or that hole will close up. Throughout this journey with Alissa we were often disappointed in the medical profession. I could not believe that a hospital would make a baby under 8 lbs with failure to thrive wait 4 hours to have a mic-key button replaced when it was her only way of eating and receiving medications.

By September 2005, we had finally gotten to have Alissa evaluated by a Geneticist at the University of Miami. The prognosis was not good and it was felt that Alissa would never eat on her own, she could not possibly have heart surgery with the respiratory problems, she would never sit up, stand, walk or run. The additional piece on chromosome #5 only compounded the problems she had. After that evaluation, our hearts were even heavier than before because we knew that it was not going to get better for Alissa no matter how much we hoped, wished and prayed it would. At this point we wanted her to have the best quality of life possible. We made the decision to have Hospice come in. They were truly wonderful and I am glad that they were able to guide and assist us. Alissa rarely cried. She would often make noises, not cooing but just breathing sounds. Alissa also did not smile. I would say that two times when I kissed her on her cheek she would open her mouth wide like a smile and one time she actually made a sound that was like a giggle. No matter what we did or how hard we tried she would not smile in response to anyone. She would often look pleased at us. The fact that she did not smile was a huge disappointment. It is one of the greatest joys of having a baby is that responsive smile. We so wanted her to smile. I think we felt a smile would mean she was happy, however, we quickly learned to tell how Alissa was feeling through her eyes. They say the eyes are the window to your soul and we believe that. Alissa may not have been able to communicate like other babies but through her eyes we saw her smile, we saw curiosity, we saw interest as she watched her brother Jake play and dance around and we definitely saw love. Alissa loved being held the most. It seemed to be the only time she was really quiet and content. We can tell you that she had many of us that were happy to accommodate her need to be held. She also slept a lot but not through the night. We had some nights were she would go 6 hours but rarely did she sleep longer than that. We really tried to give Alissa as normal a life as possible. People were so drawn to her. She was like a little doll baby. We took her everywhere with us. She went out to dinner, she went to the Mall, she went to the park and the zoo, she went for walks in the stroller through our neighborhood, she went to NY on an airplane to visit family and she dressed up as a princess for Halloween and went trick or treating with her brother. I am so happy that we did all of these things with her and have pictures to remember these precious moments.

The week of November 14, 2005 would be our most difficult. Alissa seemed to be even more uncomfortable than usual. She was having a lot of difficulty breathing and was often gasping and flailing about trying to catch her breath. It was becoming so hard for her and so scary for us to watch. She started to have fluid in the lungs. Basically, the time had come for us to make her as comfortable as possible. We agreed to begin giving her morphine. We had truly hoped God would take matters in to his own hands and we wouldn’t have to make this awful decision, however, that was not to be and as parents we had to make the most important and hardest decision of our lives and of Alissa’s. To see your child suffer is one of the worst possible things there could be. We started the morphine on November 17, 2005. We had all of our family come to see Alissa. We just knew there would not be a lot of time. For the next two days Alissa rested comfortably. She was happy to be in her swing or to just be held. On November 19, 2005, the sky outside my bathroom window that morning was pink and purple. Somewhere deep inside I am sure I knew that was a sign of what the day would bring. I think Heaven was getting ready for a new Angel. Unfortunately, my husband had to work that day. When he left for work Alissa was in my arms sleeping. She was very pale. Jake was still asleep and I took Alissa in my room and just sat with her. I remember my Mom calling and asking if everything was ok. I had told her things were the same and that Alissa was sleeping. There was a part of me that wanted to tell her to come over but for some reason I just didn’t. After I hung up I sat there crying with Alissa in my arms thinking this should not be happening. We should be getting ready for Alissa to have her first taste of mashed potatoes on Thanksgiving. It all seemed so wrong and so unfair. Our sweet daughter deserved so much more. I eventually put Alissa in her swing and went about getting ready for the day. Jake had gotten up and was watching cartoons and playing. Around 10:00 a.m. I decided to get Alissa washed up and changed for the day. Our regular Hospice nurse who was so wonderful had called and asked if she could stop by to pick up some papers, it was unusual because it was a Saturday and she was not normally the one on call on the weekends. After I had gotten Alissa all cleaned up I needed to put clothes in the dryer. For some reason I did not want to put Alissa down. I held her while I put clothes in the dryer and Jake assisted me. I will still carrying Alissa and had started to head in to the office for something when all of a sudden Alissa took a very strange breath, I just knew this was going to be it. I asked Jake to sit on the couch and not move. He did not move and he looked at me with such concern and understanding, which is hard to imagine coming from a 3 year old. I think he knew something was not right. I am sure he saw the fear on my face. I couldn’t move from the spot I was in. I just could not believe that this was happening. Our daughter was dying in my arms and there was nothing I could do to change her fate. Luckily, the Hospice nurse pulled in our driveway at about that time. Somehow, I managed to put one foot in front of the other and open the door. I told her I thought Alissa was gone. She checked Alissa and said that she would be taking her last breath shortly and she guided me past Jake and in to Alissa’s room. I held Alissa in my arms as she took her final breath. I can say without a doubt that it was peaceful. I think after months of wondering how and when it would happen, it happened the way it was supposed to. I believe in my heart she was meant to be in her Mother’s arms.

Unfortunately, the story does not end there. Each day we deal with our loss. We grieve for our daughter, we grieve for the hopes and dreams we had for her. It is such a tremendous loss that I believe we will never ever get over it. Each day I tell myself that she is in a better place and that I will one day see her again and hold her again. We have learned so much about ourselves and will be forever grateful to Alissa for teaching us about strength, courage and unconditional love. We are so proud that she was our daughter and that we were given the opportunity to love her and make her happy. It is not every day that a true angel comes in to your life.

We want to thank you for letting us share our story about Alissa. George and Tara Newiger