Friday, September 30, 2011
Today is Children's Growth Awareness Day!
Today is Children's Growth Awareness Day. It's not the most popular day, not on any calendar you buy, there's no specific colors to wear, promotional sale at your favorite store or traditional family gathering to celebrate the day. Children grow, right? It's not something you wonder about or worry about when you are trying to conceive or carrying a child to term. "We're hoping for a boy. We want a girl. As long as the baby is healthy we don't care if it's a girl or a boy." These are the things you hear from pregnant couples. But what about when the baby is not healthy, what about when the fetus isn't growing right? No, children's growth is not something you think about, unless that is, you have the child that doesn't grow or grows too much and too early.
In our case, we have the child that doesn't grow. Well she grows, but not like that of what is normal for a child. This isn't something that we are just realizing, we learned there were problems early in our pregnancy. Like all the unexpected, you are hit when you least expect it... thus the term "unexpected"...I always seem to forget that part. Our unexpected came during an early ultrasound when the ultrasound technician calls my doctor into the room. That, by the way, is never a good sign. Well, I have never considered myself "normal" or that of a person who fits into a mold, but apparently my pregnancy wasn't normal either. My placenta was much too big and the baby much too small....so much for Goldilocks finding what is just right. So after second opinions and doctors' visits back and forth in town and with specialists in Birmingham, I had what you call a "high risk pregnancy" complete with bedrest and biweekly doctor's appointments to closely monitor the growth and development of the child within me.
My placenta was way too big, you would think that would be a good thing...more to give the baby nourishment, right? But no, only a small portion of it was working to nourish and feed my baby girl. The rest of my placenta was nothing but dead tissue which threatens our pregnancy with the question of if and when it might quit working completely. On top of a clearly defective placenta, the umbilical cord delivering the all too important life to my child is missing a vessel. That would be a "double whammy" in the game show world which gave us 50/50 odds through our entire pregnancy of "if" my child would survive to birth or after and what kinds of problems she would have if she even "made it" at all.
Well she made it to 33 weeks when the she was delivered by cecarean section. No, I never went into labor, she was delivered after she had quit growing for over a month within me. The c-section was to save her from the womb that was supposed to protect her. A decision was made that modern medicine could nourish her better in a nursery than in my body...Thank you Modern Medicine!
August 13, 2001 my McKenzie was born at 33 weeks, yet was the size of a 24 week baby, at 1 pound 8 ounces and 12 1/4 inches. Unlike most moms' deliveries, mine was a scary one in an operating room with a doctor and a few attendants for me and a team, yes a team, of doctors and attendants waiting to assist my child with whatever complications she may have upon birth. My small, breech baby was pulled from my medicinally paralyzed body and wisked away to a room beside us while we waited and prayed to hear a newborn cry. Finally, it was heard and simutaneously, tears escaped our eyes. My baby was brought to my side for a quick glimpse of a beyond small body wrapped up in a blanket with big bulging eyes. I didn't get to hold her, I didn't get to touch her...I got a quick glimpse before she was rushed to the Newborn Intensive Care Unit (NICU).
McKenzie was not just a premie, but a micro-premie and would spend 67 days in the NICU. Growing in a plastic bubble of a isolette with air quality and tempurature control, bilirubin lights and wires monitoring every vital function. The NICU came with daily weigh-ins, oxygen, feeding tubes and a glossary of new terms that only doctors, nurses and parents of NICU children know. My daughter spent 67 days there of which I spent 6 nights at home and the other 60 nights at the Ronald McDonald House and then at a nearby aunt's home whle each day sitting next to her isolette and having to ask permission to briefly hold my daughter.
We brought her home that 67th day in premie-sized blue dress that was much to big for her 3 pound 13 ounce body. She weighed 13 pounds on her first birthday, and while most premies "catch up" by the time they are two, our McKenzie didn't. McKenzie is now ten and I am asked countless times if her and her seven year old sister are twins because she is still so small for her age. In the past ten years, there has been early intervention with occupational therapy, physical therapy and speech therapy. There have been countless x-rays for bone age and skeletal surveys and visits to her pediatrician, geneticist, endocrinologist, gastroenterologist, ENT, cardiologists and opthomologists to monitor, assess and treat her growth and development. She has had 5 years of growth hormone injections six days a week, 3 ear surgeries and an oral surgery. She has had her records sent to doctors in New York, France and England with a few growth disorder diagnoses given, researched and taken away. We have even traveled to Chicago to see a specialist of one diagnosis, only to tell us that wasn't it either.
So we still do not have a diagnosis, but we continue to monitor, research and follow up. It's not that we have to have a "diagnosis", a name to call her growth disorder, but when you know what you are dealing with, you know what to expect. You know to expect scoliosis at 5 years old, or that the growth hormone shots will not increase her growth any more than her not having them, or what may be around the corner for her as she matures. Many children with growth disorders have problems in puberty and medical problems that don't show up until they are adults. It would be nice to know what we may be looking forward to, but at this point we will just get the unexpected when we least expect it.
We know that we are blessed beyond measure. There are many parents that don't hear the first cry in the delivery room, there are many that never bring their baby home from the NICU and there are far more worse problems that not growing well. There is nothing wrong with being "small", "petite" or "little" and in no way with mine and my husband's heights would we expect our child to be six feet tall. At her growth rate now, we are looking at McKenzie reaching somewhere in the four foot range, which is fine with us, but does come with it's own challenges which she will continue to overcome as she ages.
I'm a different kind of parent because of McKenzie and the medical history she has had. I have her growth chart in my wallet for whenever a doctor would like to see it, meals have always been accompanied with pleading and bribery to get her to eat more, I never stop my child from indulging in fatty foods and treats, I can take in any pair of pants with just a few stiches of thread or a couple of safety pins. I get irritated when other people treat my ten year old like a baby, when other children her age pick her up like a baby and I get tired of having to justify that my child is in-fact ten years old. I use the internet to research terms like wormian bones, blue scelera, idiopathic short stature, small for gestational age, inter-uterine growth retardation, double vessel cord, abnormal placenta, tongue tie, dwarfism and all the disorders that are related to them. I can see "syndromic features" on other children and wonder if their parent has a doctor that has recognized and educated them and I can relate, sympathize and empathize with the mother who has found out she doesn't have the "normal" pregnancy. I am the parent who will ask countless questions at doctors appointments and has learned that we as parents are our child's only advocate. I am the parent who will repost the Magic Foundation's Children's Growth Awareness Day poster on my facebook wall and my blog because I know that growth has less to do with a measurement and more to do with a child's health.