David Alexander’s story
For years I have been telling stories. It’s almost second nature to me. However, this time the story is very difficult to tell since it is so close to my heart. Forgive me for the length and the detail but it is a way for me to start to heal. It also doesn’t have an ending yet, I don’t think it ever will.
be blunt, David Alexander was a surprise.
In September of 1999 I gave birth to our daughter Jenna Rayne, and since that time had been taking a low dose birth control. Since I was breast feeding Jenna and taking this particular birth control, I was told by my physician not to worry if I did not have my cycle. So I didn’t, for a while at least. When Jenna was about 8 months old I began to be a little concerned. I was gaining weight and I had a full feeling in my abdomen. I thought perhaps I should stop taking my birth control and get my body back into its natural rhythm. Six weeks passed and nothing happened so I took a home pregnancy test, which of course, came out positive.
Naturally, I went to see my doctor. I knew I was pregnant but the big shocker was how pregnant. 20 weeks! I believe my exact words were “Holy ____”. After the shock of it all started to wear off my husband, David, and I were quite pleased. We were even happier when we found out it was a boy. We had always wanted 2 children; a girl and a boy.
David and I spent the next few months in a whirlwind of activity preparing our daughter and ourselves for the new baby. I had a fairly uneventful healthy pregnancy. The only thing unusual was the baby was in the breech position, which meant I had to have a repeat C-section. During the last month I noticed there was a little less fetal movement but I attributed that to lack of space. I thought perhaps I wasn’t noticing the movement as much since I was so busy chasing after my toddler.
On December 14th, 2000 our son was brought into this world by our much loved and trusted family physician, Dr. Kevin Taggart, and a surgeon. He weighed a hefty 8 lbs 13 oz and was 21” long. He scored 9/9 on his APGAR test. I thought he had the cutest little cry for such a big boy. It took us awhile to decide on a name but we selected the one that fit him perfectly. David Alexander! He looked just like his big sister.
The first month was a lot of work and a lot of fun. David Alexander seemed to be flourishing. He ate like a champ and interacted with our little family well. It was a bit difficult to have a newborn, a toddler and be recovering from major surgery but I had a lot of help from my wonderful family. At David’s 2-week evaluation our doctor said he was doing well and laughed because he slept through the entire thing. We all thought he was such a laid back little man!
Around his 1-month birthday I started to notice how little he moved his arms and legs. When Jenna was that age she flailed around and kicked back when I would play with her feet. David Alexander didn’t. I mentioned it to my mother and several other people but we came to the conclusion he was just laid back. It still bothered me though. I remember describing it as “a little creepy”. But I decided to talk to our doctor about it at his next evaluation at age 2 months. Besides he was happy and smiling and I thought that must be the sign of a healthy boy!
February 7th David began to have a small cough. I felt so bad for him because he couldn’t seem to get anything up with it. He also started having trouble feeding. I began a regimen of putting saline down his nose and aspirating it. On February 8th I took him in to the walk in clinic at our family doctor’s treatment center. The physician’s assistant who saw him assured me I was doing the right thing and then commented on how “relaxed” David was. I told him I was concerned about it but I presume he was too busy to really pay attention. So I left thinking he was OK with just a cold.
David seemed to get a little worse and I considered taking him to the Emergency Room but then he started to improve. He had an appointment with our family doctor on February 14th. By this time I had started back to work. David seemed to be getting well so we left him and Jenna in the care of our wonderful friend and neighbor April. When I arrived that afternoon to pick them up she informed me that David had turned a little blue around the lips not long before I arrived.
With Jenna in tow I went to our appointment. I was very nervous but decided to wait my turn. The wonderful staff at Dr. Kevin’s office seemed to notice how agitated I was and they got me in right away. He was weighed and measured. He had lost 2 ounces since the 8th and I was a bit alarmed. Dr Kevin came in and asked me how everything was in his easy going manner. I explained to him what had transpired the past few days including the incident where David Alexander had turned blue around the lips. Then I told him how worried I was about David’s lack of movement and floppiness. He looked very concerned and scooped David Alexander out of my arms and laid him gently on the examining table. He listened to David’s lungs and then took his reflexes. I noticed David had no reflexive movements and I knew that something was terribly wrong. After examining David for about 2 minutes Dr. Kevin said “You are taking David to the hospital right now. I will call over and they will be expecting you. He is in respiratory distress and I would like to rule out RSV. Also, I want to have a pediatrician look at David’s reflexes and floppiness. He may have a neuromuscular problem.” With those five sentences my entire world changed forever.
We went to our local hospital, which was just up the street. I got in touch with my husband by cell phone and he met me in the parking lot of the clinic. David Alexander was admitted as quickly as possible and had a nebulizer treatment. He was tested for RSV and fortunately the test came back negative. It took a team of four I. V. therapists and three needle pokes to get David Alexander’s I.V. started because he was so chubby and his veins were so tiny. Dr. Kevin arrived after his last appointment to see we were settled in.
One of the leading pediatricians in the area came and examined David Alexander. This is when I began to learn some about some very frightening things the worst of which was called Werdnig-Hoffman Disease or Spinal Muscular Atrophy type 1. The pediatrician was unable to give me a definite diagnosis but said he suspected it was SMA1. I asked him what the prognosis of SMA1 was and he was reluctant to tell me since he was not positive this was what David had. All he would tell me was SMA1 children have a profoundly shortened life span. I wanted to scream, cry, and rage but I found some sort of inner strength I guess and I held myself together for my family. I made some phone calls to our family, our priest and our dear friend April.
evening, our priest Father Gary baptized David Alexander. Dr. Kevin returned
around 10 P.M. and said “Well kids, I’m sending you up to Children’s
Hospital in Seattle. I think they will be better equipped to give David the care
that he needs.” Our friend April came and took Jenna home with her for a sleep
over. I rode in the back of the ambulance while my husband followed in the car.
It was the longest ride of my life, but David Alexander snoozed though the whole
We arrived without incident and spent some time waiting in the Emergency room for a bed to open up. David was admitted to the Pediatric Intensive Care Unit (PICU) at Seattle Children’s Hospital that night. It was the best place he could be and for us it was the worst place he could be. I fell into an exhausted sleep at his bedside.
The next day was spent talking to doctors. This was when we met Dr. Zimmerman, to whom I will be grateful for the rest of my life. He sat down with us and answered ALL of our questions in a straightforward but caring manner. He told us all the possibilities of what might be wrong with our little man. It was frightening but somehow refreshing to find a doctor who was not afraid to tell us the truth. He told us of several different diseases from Duchene Muscular Dystrophy to Werdnig-Hoffman disease (SMA1). He was honest and said he thought that David Alexander most likely had SMA1. He said there was a simple blood test that would likely give us our answer. I asked him what the life expectancy of a child with SMA1 was and he told me “Usually, no more than 2 years.” It was like a slap in the face but I am glad he told us.
Then the neurology department came and poked and prodded my poor baby like he was a scientific experiment. They wanted to do a whole battery of testing from EMG (Electromyograph) to MRI and muscle biopsy. Dr. Zimmerman asked them to wait until we at least started the genetic blood work. I held David Alexander for awhile intimidated by the monitor wires and IV. He was working so hard to breathe. I knew they would probably have to put him on a ventilator to give him some rest but I was worried if they did he would never come off.
The next few days were a horrendous blur. I felt numb. They intubated and sedated David Alexander. He didn’t tolerate being intubated very well and had several tachycardiac (high heart rate) episodes. There was an endless parade of doctors and specialists all wanting something of our poor tired boy. We made arrangements to stay up in Seattle since we live over an hour away. Jenna was sick too. She had a horrible bout of the stomach flu. Luckily, my Mom came up from Oregon to save the day. She took care of Jenna (and David and I) and went to visit David Alexander.
We also had a consultation with Dr. Glass from the genetics department. He explained while he fairly certain David Alexander had SMA he wanted to wait until the genetic test came back. He pulled some strings and the test came back in a week instead of 2 weeks. Then he arranged to have a meeting with Dr. Zimmerman, David and I. We walked into the consulting room in the PICU and as soon as I saw the grim look on their faces I knew the diagnosis. Dr. Glass looked me straight in the eye and said “I am very sorry but David Alexander does indeed have Spinal Muscular Atrophy.” I asked him and Dr. Zimmerman several questions about the prognosis of our son. I was told that most babies that manifest SMA at such an early age do not usually see their first birthday. Then I asked if David Alexander would ever come off of the ventilator and Dr. Zimmerman said, “I don’t know.” They left and my husband and I sat in the consultation room and sobbed into each other’s shoulders. Until that very moment I had some small hope that it was something else. Something fixable. It was at that very moment that I truly realized our son was dying.
The Most Difficult Lesson
We knew David Alexander was not doing well when we finally got the diagnosis. After sleeping fitfully on the terrible news we had just received, David and I took a walk to the hospital and talked about what we should do. We decided to wait and see if he was well enough to try him off the vent. If his muscles had deteriorated too much, we would put him back on until we could get the family together and then decide what to do from there. We also decided to start looking into hospice and discussing our options to take him home.
we got to the hospital the nurse told us he had a rough night. His sats had been
going up and down and he had another tachycardiac episode. I held him and
snuggled him for a while, trying not to cry. Then to my surprise Dr. Zimmerman
came in and said David was well enough to try taking him off the vent. He was
over his cold and breathing above the vent. He was honest with us and said there
was a 50/50 chance that David would have to go back on. We discussed what
options there were for David if he was unable to breathe on his own. We also
informed Dr. Zimmerman and our nurse Pam of the decision we had made. Plans were
made for the attempt to happen early that evening.
Since things were going so well we made a trip home. Jenna needed to
stretch her legs, play with her toys and see that her home was still there.
There was also laundry to fold and a house to clean in anticipation of bringing
David Alexander home. We decided to be optimistic. It took us longer to get back
to SCH than expected but I knew when we arrived he would be off the ventilator
and looking around. I was wrong. We arrived just after they put him back on the
vent. He had not done as well as we had hoped.
That evening David Alexander was then moved to a private room. His respiratory muscles had deteriorated to such a degree he could no longer breathe without the aid of a ventilator. After much thought and discussion we came to the most difficult decision anyone could ever make. We could not in good conscience keep David Alexander alive by unnatural means. It was time to let him go with some dignity. I thought we should wait a few days and let everyone have a chance to say good-bye. My husband agreed. We made a few phone calls and then I sobbed myself to sleep.
The next morning, February 24th, dawned bright but cold.
Our family and friends all decided to come that day to see David
Alexander. He was quite alert! He
looked around with interest at everyone who visited with him and even managed to
smile around the ventilator tube at both Mommy and Daddy! Then all of a sudden
his blood oxygen saturations began to drop. Pam, our nurse came and suctioned
him as usual but this time it didn’t seem to help. She called for the
respiratory therapist and eventually another nurse as David Alexander’s heart
rate began to slow. It was terrifying to see so many people working on him to
get his blood oxygen levels back up. My husband and I looked at each other and
we knew the decision of “when” was being made for us. Just as quickly as he
went downhill, David Alexander stabilized. He fell into an exhausted sleep for a
while and when he woke up he looked at me. He smiled a little but his eyes were
so tired and his face was haggard.
My husband and I looked at each other in a way that spoke volumes. I talked with Pam and she began helping us make preparations to say good-bye to our son. I was numb as we arranged to go to the chapel. I wanted to be away from all the medical equipment. Pam took David’s footprint and handprint for me and gave me a memory box. I remember talking through a fog to several doctors about what would happen and about organ donation. It was difficult not to cry as I signed the “Do not resuscitate” orders and a tissue donation form. At some point in time, I made a small speech to our family and friends telling them what we had decided and what would happen. I don’t remember a single word of it, but I am told I was quite eloquent. Then suddenly it was time to go.
A respiratory therapist unhooked David Alexander from the ventilator and manually resuscitated him. His Daddy carried him to the chapel.
My husband laid David Alexander in my arms and the respiratory therapist removed the tube. For a moment time stopped as my beautiful son looked up at me. He then began to cry. It was a hoarse, harsh sound since he had been on the vent for so long. It is a sound I will never forget for as long as I live. He settled down a bit and his family and friends gathered around, touching and holding him, as they felt necessary. Then he was back in my arms and my eyes were locked on him. I memorized every detail. His sweet little face, his dimple, his hands, his feet, his smell, the feel of his skin and his fuzzy little head are etched into my very being. My friend April brought Jenna in and she kissed and loved her baby brother. We took pictures and then our friend took Jenna home. David Alexander’s Daddy held him for a while kissing and cuddling him. When he was uncomfortable we had Pam, the nurse give him some morphine. I held him again and sang his favorite lullaby with Daddy’s help. We rocked for the longest time.
There is a legend that when someone is about to die, a crow comes and escorts their soul to heaven. We could tell by how he breathed that David Alexander would be leaving us soon. I looked up at the sky through the skylight in the chapel. My husband wept and told David to go and play with the angels. Somewhere very close by, a crow called. A short while after that David Alexander Swetz opened his eyes and looked at his Mommy and Daddy for the last time. I said “Good-bye Baby,” and he breathed his last breath. There are no words in any language that can describe the pain I felt the moment he left us. The crow called again.
On March 1st we had a lovely memorial service for David
Alexander. The day before it, Seattle experienced an earthquake so many of the
people who wanted to come could not make it. We asked everyone to wear bright
colors that a child would love and bless them all, they did. Several people
spoke including Dr. Kevin. Then I read a letter that I wrote to David Alexander.
At the conclusion of the service we had 72 balloons that we gave to everyone to
enjoy. There was one for every day of his life.
We are in the
process of healing our broken hearts. We miss our little man so much it hurts.
However, David and I realize that life must go on. Both of us have made a
decision to live life, not just exist in it. We are determined to live David
Alexander’s life for him. He was a blessing to us.
he ever knew was love.