Danielle Elizabeth Jacqueline Smith
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Danielle was born on May 15,1994 at Scarborough General Hospital after a long and painful delivery that lasted more than 30 hours. It was a marked contrast to an entire pregnancy that was trouble-free. I had done everything an expectant mother should - alcohol, cigarettes, coffee, tea were avoided – but still, we had absolutely no idea of what was in store for us.
Immediately following her birth, our daughter was whisked off to the Intensive Care Unit for "suctioning due to meconium aspiration." She was returned to us briefly and then taken away once again to the Special Care Unit. When we went to see Danielle she could be heard long before we could get anywhere near her. It was the worst nightmare our lives to see our little baby hooked up by wires leading to monitors /machine and the scariest and loudest stridor emanating from her with every breath she took. We later learned she was on antibiotics and oxygen and the pediatrician advised that the stridor was nothing to be alarmed about since this was due to " bruising of trachea caused by suctioning and it is possible that she has a floppy trachea which will all go away in time as she grows."
We could not be convinced Danielle was fine since every day hoping to take her home we were told she could not leave due to "dusky spells." The pediatrician tried different medications including caffeine, in the hope to stop these episodes so we could take our daughter home. We suggested Danielle be transferred to Toronto’s Hospital For Sick Children but our pediatrician quickly shot down our request saying "that hospital handles very sick children and the doctors there will laugh" at him.
After two weeks in the Special Care Unit, the pediatrician gave the okay for Danielle to go home re-assuring us that she is "just a normal child" and we should take her to our family doctor for regular check-ups regarding upcoming immunizations and normal growth progress. We left the hospital nervous, tense and scared to death at the thought of Danielle having one of those episodes at home - we have no oxygen!! We kept our fingers crossed and hoped to God we were wrong in entertaining all the worst-case scenarios. We should have identified trouble at the time – Danielle’s stridor remained noticeably loud – but we hoped for the best and trusted the doctor’s word that everything would be okay with time. After all, what did we know as first time parents who were not even in the medical profession!!?
Once we were home we never took our eyes off Danielle - mainly due to nervousness. And we noticed shortly after a severe indrawing of her upper abdominal area and that her lips would turn blue once she started feeding. The entire time we fed Danielle drop by drop to avoid her going blue or becoming dehydrated. We watched her working really hard to breathe while sleeping and it was evident she was becoming more and more tired just trying to breathe. We decided to see our family doctor who was just as alarmed and referred us to an ENT specialist who immediately arranged for Danielle to be admitted to Toronto East General. Tests ran at that hospital showed alarmingly high levels of carbon dioxide in her blood and it was decided she should be transferred by ambulance to Toronto’s Hospital for Sick Children.
A bronchoscope done at the children’s hospital revealed bilateral vocal cord paralysis which explained why Danielle’s breathing was laboured and stridorous. The ENT specialist there explained that the problem was probably congenital; that an MRI had revealed absolutely "nothing wrong" with Danielle and it was highly likely cord movement would return at the age of three to four months. He did recommend a tracheostomy in the interim but we were completely devastated and could not even bring ourselves to think of the procedure - of putting a hole in our baby’s throat. We decided to wait to see what would happen, hoping for the best. Mainly, Danielle stayed in the hospital and it was the doctor’s and our wish that at about this time, when Danielle was fast approaching three months of age, chord movement would return and she would simply outgrow the problem.
After a series of horrifying experiences resulting in Danielle being intubated several times, fed intravenously and put on all kinds of medication including sedatives (arms also restrained at times), the question of surgery came up once again. Having gone through so much for the first 4 months of her life – more than we had gone through our entire lives – we agreed that a tracheostomy would allow her to go home and live a more normal life. Danielle was trached at 4 months old and has been home ever since.
We have gone through the stages of shock, anger and guilt but somehow managed to "hang in there" for Danielle’s sake. Danielle’s personality has helped us a great deal – she’s bright, outgoing and good-natured with a delightful sense of humour and an amazing lack of any sort of "hang-up" – she sees herself as no different from any other child.
Our ENT doctor had scheduled clinic visits every 6 months for assessment of vocal cords and had advised that cord movement could come back at any time but the maximum amount of time according to the medical journals would be 3 years. It’s a waiting game, was his declaration. The visits became annual, subsequent scopes revealed "little or no cord recovery" and as Danielle grew past three and a half years of age our focus changed from cord recovery to the possibility of surgery when she is older. Danielle is almost 5 years old and we have been waiting ever since!!
They said it would get easier once she gets older. Truth is, we still have the old problems (nursing agencies, government agencies, insurance companies) with additional problems eg. school, discrimination, frequent infections due to exposure to other kids. Danielle is also at the age where she wants to be involved in everything – dancing, skating, swimming, sports – and as much as we want her to do all these things we are extremely protective (paranoid?). At the same time we don’t want her to start thinking she is different from others in a negative way! Danielle is our first and only child.
Danielle is scheduled for a bronchoscopy on May 31, 1999 and we will know what’s going on at that time. We are, as usual, hoping for good news. Our ENT doctor has hinted that it is time to develop "a plan" to explore how to have Danielle’s trach removed depending on what he sees.
We are very interested in corresponding with anyone whose child is /was trached and / or diagnosed with bilateral vocal cord paralysis. My husband Michael and I feel we can probably pass on a good deal of information to parents of newborns with trachs but we also need to continue learning about what the future will hold for Danielle and us.
- Jackie Fredericks (Danielle’s Mom)
- e-mail – mwsmith@idirect.com
