Lorri-Anne Champagne was born with spina bifida in 1962. She, now 54, shares her journey.
Imagine being the young mother of three sweet little girls, all under the age of six years. Now, imagine being VERY pregnant with a two-week late baby at the same time. You are finally in labour and you’ve got a very bad case of phlebitis. On February 23, 1962, you have an X-ray to find out what is keeping this baby from being born. The results go to the doctor. He decides to wait to give you the news and keeps the information to himself because, “these babies usually die.” Meanwhile, the X-ray shows the baby in full delivery position, head down in the birth canal.
February 24 arrives and the mother is still in labour until 8 pm. The baby is born and Mom is told she has a girl. The nurses, however, don’t let the mother see her baby. The baby is swept out of the labour room and the nurse quickly makes a mental note to contact a priest to be ready to give the last rites since the patient’s chart says “Roman Catholic.”
With utter HORROR, the family doctor tells the baby’s father and grandmother, “Your baby is a girl and, I am sorry, but she has a hole in her back and spine, with the spinal cord sticking out.” He tells them not to hang on to any hope; the baby has what was known as myelomeningocele, or spina bifida, in its worst form. He says IF these babies live at birth, they will certainly die within a few days or a couple of years.
Looking back, we see there was mass confusion for a couple days in the maternity wing at Stephenson Memorial. It was a first: There was a baby girl in the nursery with a hole in her back. All the involved professionals thought there was going to be certain death. The little girl had other ideas!
The doctor finally told my mother everything. Since it was a Saturday, he recommended that if I was still alive Monday, my dad should drive me to Toronto’s “Hospital for Sick Children” to see a children’s neurosurgeon: Enter Dr. E. Bruce Hendricks.
On Monday morning, Dad and Granny took me to Toronto. Mom was being discharged from the hospital, still with phlebitis. Dr. Hendricks checked me and decided I was too small and that Dad should take me home and look after me. He told Dad that he was certain I would die within the two weeks, BUT, if not, he was to bring me back and he would operate if I gained a little more weight. (Hmmm…maybe this is where obesity entered my life.) This shows the difference in decades of education, leading to today’s micro surgeries. In 1962, I was well over eight pounds and I still had to gain more weight, before surgery.
While I was at home waiting for surgery, SickKids nurses had shown Dad how to care for the hole on my back. He rolled donut bandages to place around the hole. He was told that at all cost, DO NOT RUPTURE THAT MEMBRANE, or I could die immediately or get an infection leading to death.
At this time, 54 years ago, there was some proof that children with this severe form of spina bifida could never walk, talk, think, eat or drink on their own or control their bowel or bladder. They were also almost 100% positive they will have hydrocephalus which needs a plastic shunt to drain it, otherwise the head will swell. The child will likely have a tethered spinal cord and a latex allergy. There had been a few patients who lived until 4 or 5 years of age. Most parents agreed that the best place for these children is an ‘institution for the mentally retarded’. You would be able to visit…if you want to!”
Garden Hose Shunts
When Dad took me back to Sick Kids two weeks later, Dr. Hendricks took me in for surgery. He had to push down the two vertebrae that were involved in the rupture, at the region of L4 & L5 in the spinal column. It was also discovered that I had hydrocephalus. In years past, they had drilled holes in the head to relieve the fluid pressure, but by 1962 there were ventricular shunts, which were like a plastic garden hose watering the inside of the body. There were also new Lumbar Peritoneal (LP) Shunts, doing the same work, but the garden hose, in my case, was watering my body from the bottom of my spine. IT WORKED.
Dr. Hendricks provided these analogies for me when I was old enough to understand. He was the most wonderful man to ever grace my life…other than Dad. He saved my life. To my parents and me, Dr. E. Bruce Hendricks really was a “miracle worker.”
Life must have been devastatingly sad around our house, I suppose. My wonderful mom had been told, “Don’t get close to her. Don’t love her and just get her out of your mind, because she is sure to die.” She never even got to hold me in the beginning. They say your first bonding is always mother and child. Well, this time it was a little girl starting life bonding with her daddy! I must give credit to my maternal grandmother as well. She came from her home in Northern Ontario to help out with me. For this reason I believe I had a special bond with Granny. At least, I’d like to think I did.
At home, there were also three older sisters waiting for their baby sister to come home, with great anticipation. I guess it was difficult – trying to educate my family and public about my birth defect, when all the professionals keep telling my parents I was still not going to live long.
After a couple of surgeries, an LP shunt and over a 100 stitches, just to pull all the skin together on my back to cover the hole (not to mention the stitches used under the skin for the surgeries themselves) and lots of hospital time, my parents finally took me home from the hospital more than six months after my birth.
Of course in 1962, they could not promise the moon. Mom and Dad were told there was no way to know what motor skills, if any, would present (i.e., talking, limb motor function, holding my head up) and they were certain I could not hold my bowel or bladder. My parents were ready for my life to be filled with diapers – Ha! Fortunately, disposables had just been invented…yay me! I hated rubber pants. They were hot and uncomfortable on my cute, but fat little legs…the elastic on them was heavy, too.
The medical team consensus was that I would likely pass away before I left infancy. My family prayed and followed every bit of advice, instructions and care plans about how to take the best care of me – for as long as I lived, however short it might be.
What was the diagnosis for my degree of spina bifida in 1962? There was the possibility of being mentally retarded, unable to walk, talk, control my bowel and bladder and, depending on brain damage or hydrocephalus problems, other possibilities were blindness, seizures, improper body growth, etc. My parents were terrified about it all.
By the age of almost three years my doctor was calling me the “miracle baby of ’62.” Every time I went back to see Dr. Hendricks, he would call all his residents, the nurses in the nearest departments and sometimes parents of other children waiting for their appointments into my tiny 6 by 9-foot examining room. He would tell everyone the story of my surgeries at birth and why he named me his ‘miracle baby of ’62.’ How proud he was of me…and he would repeat this performance every time I went for an appointment. Any ‘kids’ who had the great fortune of being a patient of Dr. Hendricks will know what I mean. You could not help but laugh at him or with him. He believed in, “laughter heals.”
Around this time, I was the sweetest little girl who had learned
how to sit and laugh. I had great manual dexterity and played
with my little toy trucks. Mommy was starting potty training
– which was slowly becoming a reality. The doctors felt that
by this time, if I had no interest in even standing up – which
apparently I did not –I would never walk. While my big sisters
all went to school, my mom stayed home with me.
One day Mom was busily doing the laundry in the kitchen
and she set me down on the kitchen floor. My favorite truck
was across the room and I wanted it, NOW! (I was told I could
communicate well.) While my mom was sorting the laundry
piles on the floor, she looked up in time to see me get myself
up off the floor, walk across the room, bend over to pick up my
truck, walk back to my original spot, get back to a sitting position
and play with my trucky. My mother nearly had a massive
coronary!! She has told me many a time; I was just smiling and
merrily playing, not thinking about anything else – not even the
crucial act I just performed!
What was the secret to my success? No one was carrying me.
Mom said I was carried everywhere because I was “fragile”, “the
sick one”, or “the one who almost died and still might”, etc. I
am not offended by these terms, but I know now that many of
them are what spoiled me or made me bratty at times.
I am skipping ahead with my life because for reasons that
only God knows, I had a relatively normal life. I was fairly smart
in school, but by the time I turned 18, I knew everything, quit
high school and was married.
“Hold on, back up the turnip truck,” you’re thinking. What
about my health? Well I never had to have a shunt revision after
birth until I was 23-years-old. I was active, but lazy in P.E.
(physical education). This was not due to anything related to
spina bifida, but I was obese. I loved and continue to love food!
I tried to lose weight so many times. I even had my stomach
stapled. I have lost over 100 pounds, but did not keep it all off.
Even today I am desperate to lose 30 pounds; it could mean a
better quality of life.
In 1981, I pulled off what I think is a dandy – a near miracle
by giving birth naturally without an epidural, to a daughter who
did not have spina bifida or hydrocephalus. She is beautiful and
has given me two wonderful granddaughters, who don’t have
As I grew up…well, I think I should say, as I aged, I needed
surgery for the Chiari Malformation. As ‘my spinal column and
skull are squeezing a part of the brain, which has been hanging
down since birth, but it grew bigger.’ My analogy: “I have
Droopy Brain Syndrome.”. I had my tethered spinal cord operated
on about six years ago.
I went back to high school at 30 and loved it. I graduated
with honors, winning an English Bursary because I had the
highest Grade 12 English mark. I went on to Georgian College
and earned an Advertising Diploma. During my second year of
college, I won the Dr. E. Bruce Hendrick Scholarship Award.
I received mine in the mail, but was invited to attend the next
year’s celebration, which I did. I was so excited and surprised to
see my medical hero, Dr. Hendricks. As I stood near him in the
crowd, I heard, “I can’t believe it. Could this be my miracle baby
of 1962 ? Lorri Champagne?” We hugged for what seemed like
forever. He whispered, “I’m still proud of you kid.” I was about
34 then. It was the last time we were ever to meet.
Life has never really slowed down much for me. I consider all
my surgeries and medical procedures (although each time was a
serious event) as a sort of a hiccup in my life. You see, I am the
author of a trilogy. The first book was published in 2013. Part
2 is currently at the printer and I hope to have the final book
(third), wrapping up my story, out by the end of this year. It
took nine months of deep research for me before I wrote a word.
My project is called “The Common Threads Trilogy.” My
story is fictional/historical and spans 150 years. I bring together
African Slaves, a young Scottish married couple who are moving
to Chatham, Ontario to start a potato farm together. Later, I
bring a black member of one family to marry a white member
of the other family. I also move the couple to Mississippi
in 1947: a multi-racial marriage which produces multi-racial
twins. These twins grow up in a segregated state: A state which
is strong in Ku Klux Klan.
Book 1 can be found on Amazon and is titled “Common
Threads”. Book 2 is called “Common Threads II” and will be
available at: iUniverse.com, Amazon.com, Chapters.ca and
Indigo.com by February 1, 2016 I expect. So I am a published
author! A Mother, Grandmother, wife, sister, daughter, I volunteer
at our local hospital, where I was Public Relations Chair
on the Volunteer Board of Directors for 5 years. I am going
to be 54 years, in February and I am still The Little Girl Who
Could…and I prove it every day!
You are probably wondering; I had full control of my bladder
for 40 years and full control of my bowel for 48 years. I still
walk but I now have to use a cane, a walker or a motorized
wheelchair – depending on the severity of my discomfort. I recently
was diagnosed with osteoporosis, too. Yay! So as you see,
each day, each moment of the day, is so very different. I know
my life has been one miracle after another.