His Name is Michael

Abstract

Every new mother hopes to have a relatively easy delivery and to give birth to a healthy child. The reality is that doesn't always happen. In this article, the nurse author describes her personal experience of giving birth under emergency circumstances to a critically ill baby diagnosed with Down syndrome. The experiences of the author and how nurses, and others, supported the parents and baby during those first few critical months are described. The story concludes with a summary of how life looks for Michael at age fifteen.

Keywords:

He is not "Down's." He is not "retarded." He is not "Special ed." He is not disabled. He is not a case, client, or consumer. He is fifteen years old, smart, clever, athletic, artistic, polite, kind, and incredibly handsome. His name is Michael and he is my son.

As I sat down to write this article, I realized there are multiple perspectives from which to tell our story. I finally decided to focus on the early years as Michael fought for his life to become a healthy toddler. I've tried to interweave the fundamental values I hold about humanity with how people, including nurses, have helped support my husband and me in raising Michael. Today, except for a scar to remind us of what we experienced, Michael lives a life similar to any healthy, active teenager.

On July 3, 1989, two weeks past my delivery date, I was put under general anesthesia for an emergency caesarian section. I had been told my unborn baby was losing his heart rate. As I lost consciousness, I prayed that my baby would not die. When I awoke, my husband George and my obstetrician were standing by the bedside. They were both crying and my doctor said George and I had a little boy (we had already chosen the name Michael). Then he told me Michael had a hole in his heart and that he had Down syndrome. As a former critical care nurse, I was very upset and concerned about Michael's cardiac condition. I pushed the diagnosis of Down syndrome into the background because I knew that, unlike the hole in his heart, it couldn't kill him.

I got to see Michael for the first time as he was wheeled into my room in an incubator. I did not get to hold him, but did get to briefly stroke his tiny body before he was transferred to the neonatal intensive care unit (NICU) at the Children's Hospital across town. George went with him and I was left alone. We had only moved to Tennessee a few months before and there were no relatives or lifelong friends at the hospital that day. My mother and brother were able to come a few days after Michael's birth, and George's sister and her husband arrived a few weeks later. During those first few days, though, and for the years that followed, it was our new friends who were ever present to love, support, humor, and pray for us as Michael fought for his life and eventually became a healthy little boy.

While I actively focused on trying to recover as fast as I could to get to see my baby, the nurses at the NICU were making videotapes of Michael to send to me. I cannot stress how important and significant this gesture was for me. I remember crying and being so grateful when my nurses brought a VCR into my room so I could watch the first video. The NICU nurses delicately held Michael as they respectively balanced explaining things to me nurse-to-nurse and sensitively talking to me as a new mom with a critically ill newborn.

It was my third night apart from Michael and the first night George went home to sleep that I experienced my first of what would become several panic attacks over several years. I truly thought I was going into shock and kept asking the night nurse to take my vitals and do my blood work. My heart rate was racing. I couldn't catch my breath. My nightgown was soaked. What I did not know at the time, and what the night nurse did not recognize, was that my physical reaction was due to extreme anxiety. I made it through the episode and it wasn't until a few years later that I learned about relationships between traumatic birth experiences and anxiety/panic disorders.

By the time Michael was a few weeks old, I knew all the nurses and doctors and staff at the NICU. I spent about fourteen hours per day there and George would join me when he wasn't working, and he would be there when I went home to sleep and shower. Due to his cardiac condition, Michael was extremely weak and did not have the strength to breastfeed. At the same time, I was very frustrated that I wasn't producing much milk. We both certainly tried to do our jobs, but getting calories, as well as my all-important antibodies, into him was all I worried about and tried to do. One thing most of us have as nurses is the intuitive sense of when something is going wrong. It was during a feeding when Michael was about two weeks old that I sensed he was going into heart failure (remember I used to be a cardiac intensive care nurse). The numbers didn't indicate this, but I was certain, and within a couple hours, it was true.

Within the next couple days, the decision was made that Michael needed to have his AV canal repair done as soon as possible. So after five weeks in the NICU, we were able to take Michael home the night before we were to drive him five hours to the University of Alabama (UAB) where he would have his heart surgery. I stayed awake all night feeding him every three hours by tube. I helplessly counted his short, labored respirations at 120-140 per minute. I was so frightened he would die in front of me.

The drive to UAB was filled with anticipation and sadness. Would this surgery mend our child's broken heart, or would this be the only time we would travel with him and stop for a picnic? The morning of the surgery was the only time I had seen my son "pink" and healthy-looking (from scopolamine) rather than pale and blue. I still remember my amazement at the thought. When the elevator door closed as a surgical resident took my son to the Operating Room (OR), I collapsed to the floor. I don't remember how I got to the waiting room, or how I survived the phone calls from the OR to the waiting room volunteer reporting on the surgical status of various patients. But, finally, our call came, and we knew Michael had made it through surgery.

Visiting hours were very strict and limited at UAB. At first, I was outraged, and then after seeing how attentively and expertly Michael was being cared for, I was relieved that someone put limits on my visiting time, or I would never have left his side and taken care of myself. I have wondered, to this day, how families deal with the changes in physical appearance of loved ones as they lie immobile, hooked up to wires and machines. I knew what all the beeps and sounds meant, what every line and tube was for, and that Michael looked swollen to twice his size because of extra fluids. I trusted the nurses and was grateful to be off duty for a few days. I desperately needed to get my strength back. George and I went for a walk downtown, I bought the classic story "The Little Prince" by Antoine de Saint Exupery, and we went to a movie. A few days later, Michael finally came home, we thought for good.

Less than twenty-four hours later, I had a sense again that something was wrong. A quick head to toe assessment and check of his surgical scar and I was certain that Michael had a mediastinal infection. Within hours, Michael was back in the hospital, and his surgical wound was opened and cleaned and packed. During the next two weeks, friends came in shifts to hold and feed Michael and to give me a chance to go outside and refresh myself in the breeze from the fall-like air.

When Michael was discharged, George and I made a deal. He would do the twice daily changes and I would do the every three hour tube feedings. This schedule went on for almost three months. I got a reprieve when my two closest friends from college left their own young families to come to Tennessee to help teach me how to be a new mom. The lesson and gift they gave to me, above all, was that I had an adorable new baby boy, and I was an exhausted new mom. Not once did they let on that my experience was any different from any other new mother's...and I needed that. I didn't want to be different and I didn't want Michael to be. And to this day, I have never defined myself or Michael, or let others define us that way, either.

So, Michael healed and grew, and learned to drink from a bottle. George and I still recall the relief we felt when we finally stopped measuring Michael's fluid intake. I have to admit, we still share a smile today when we hear Michael gulp down a huge glass of milk. Hearing him swallow remains music to our ears and probably always will.

I will fast forward and say that Michael has had two surgeries for PE tubes at eighteen months and two years of age. Due to multiple ear infections, he lost his hearing over several years and was almost deaf from the ages of nine to fourteen. He learned to be reasonably conversational in sign language over the course of one year and used assistive listening devices at school. He had corrective ear drum surgeries this past November and now has only a moderate hearing loss in his left ear, while remaining deaf, for all practical purposes, in his right.

Following two episodes of acute angioedema (tongue swelling) of unknown etiology when he was thirteen, Michael was diagnosed with Celiac/Sprue disease during a routine blood draw when a Celiac profile was accidentally checked on the lab request. So, for the past year he has been following a wheat- and gluten-free diet. Michael has never been symptomatic for Celiac disease. We have subsequently learned that many resources state that one in 133 Americans have the disease. Our local Down syndrome physician expert now recommends screening for all children with Down syndrome beginning at age three.

Bringing things up to date...how does life look for Michael at fifteen? He is a healthy, active teenager. He has started high school and is fully included in the general education curriculum. He is a busy member of his community and is learning to be an advocate for himself and others. He fully expects to live on his own and is taking steps, with the support and encouragement of others, to assure that this happens. This all requires positive, optimistic, enthusiastic, can-do attitudes from everyone in his life. And Michael is the best role model for all of us!

The following are Nursing Implications, based on our family's experience, to consider in your nursing practice:

• Provide as many opportunities as possible for parents to hold their newborn infant; if this is not possible, provide pictures, videotapes or other media;
• Offer factual information about improved quality of life and positive outcomes for infants with Down syndrome following correction of cardiac defects;
• Provide parents with the same support and information about parenting that is provided to others;
• Offer parents an opportunity to verbalize their dreams, hopes and fears;
• Ensure that the medical, nursing and psychosocial needs of the postpartum mother are managed; consider the additional emotional trauma of mothers whose infants are born with a life-threatening medical condition;
• Ensure that the psychosocial needs of the father or partner are met;
• Provide, whenever possible, the opportunity for mothers who wish to breastfeed. If this is not possible because of the condition of the infant, provide the mother with support and education about pumping and freezing breast milk. Recognize the potential need for a lactation consultation to address the special circumstances of mother and infant.
• Develop a teaching plan that includes parents and significant others in the daily care and support of the infant;
• Encourage the family to develop and maintain natural supports throughout the hospitalization and upon discharge;
• Develop a discharge plan that includes immediate access for parents to consult with nursing and medical supports. Include contact information for developmental and social service agencies, Down syndrome organizations, and parent support groups.