I look at my own son and I don't even want to think "what if?" because if fills me with dread knowing full well that our son wouldn't be where he is today.
My pregnancy wasn't the most ideal, and yes he tried to storm into this world every chance he got, but he stayed safely inside for 32wks. Even after my water fully broke at 31wks every scan showed he was doing marvelous, the day before I was 32wks they done a full intense scan to check everything, they wanted to send me home, the safest and most comfortable place to be to see if labor would finally come on. They spent a long time looking and measuring everything to make sure he was in perfect health before I was discharged. I can remember the tech walking me through everything "he's taking spontaneous breaths, that is good, we want to see that. His heart is prefect and functioning properly, his kidneys look great." she spent a great deal of time on his brain, "it's prefect, everything is the right shape, right size, see here? this is the right side, this is the left, this is the frontal lobe. It's the best looking brain I've seen!" I breathed a sigh of relief, my child was prefect, and he looked as ready as he could be for delivery at 8wks 1day premature....everything would be fine right?
I wasn't discharged until really late in the evening with a sign of things to watch for "If you have a fever over 102, if you go into labor, start bleeding, leaking a lot of fluid, have unusual pains, or he stops moving you need to come back right away! If you have any questions, you need to phone us." I laid down shortly after we got home but woke at 2am with a fever and in labor, my contractions were less than 5 mins apart, we raced to the hospital prepared to welcome our son into the world. When we arrived they hooked the monitor up wrong and even though by that time my contractions were less than two mins apart, strong, and long the resident told me I was not in labor. It took 45mins before the OB that was on call came in and all she had to do was look at me and told him "she IS in labor, move her to a birthing suite and start an epi and pitocin" I was 2cm dilated.
After I was prepped and we were ready to settle down and wait the nurse told me "I will turn that off so you can get some sleep" thinking she meant the TV I kind of laughed when she left the room and left it on. Mike shut if off and we laid down to sleep. The nurse spent most of the early morning just peeking her head in the door asking if I was ok, I was checked at 5am and was 3cm and she came back again at 8am and I was 4. At no point did she check the long feed of the monitor to see how he was doing, which I did find odd but who am I to second guess? she knows what she is doing right? At 8:30am, just before shift change, she came back in and laughed saying she better check the feed before handing off. The look on her face sunk my heart, I knew something was very very wrong. She picked up the sheet and quickly started going through it, going through mounds of print out before finally stopping. He was in distress, serious distress, and had been for 45mins already. As she ran to get the OB she told me I would need to be rushed in for an emergency c-section. When the OB came in she said the same thing but said she would check one last time to see how far I was dilated....His head was crowning, I was so numb from the epi I couldn't even feel the pressure of his head moving through the birth canal or shredding me to pieces.
I thought this was ok, I was fully dilated and he was coming out, everything would be fine right? right!?! The OB asked the nurse to call the NICU and tell them a preemie was being born, they failed to tell them he was already crowning, that he was in distress, and that they were needed ASAP. Instead of delivering him she did the one thing that I have read over and over again that should never be done, she grabbed a hold of his head and forcefully shoved him back inside me. With each contraction instead of allowing him to move down and out she pushed against the contractions to keep him instead. The NICU team finally arrived but her resident, who she wanted to do the delivery, was MIA....so she made everyone wait until he was found. My son remained in serious distress the whole time. 48mins after discovering he had been in distress for 45mins already he was finally delivered...he was not getting enough oxygen for 1hr 33mins and had been forcefully kept inside my womb.
Nicky was quickly rushed to the NICU and was placed on CPAP on room air, hooked up to IVs and a feeding tube. I was so numb from the epi that even after it was removed and stopped I was numb for hours and unable to go see him. I finally had to lie and say I had full feeling back so I could go visit him after lunch, I still needed a wheelchair because I was still weak. The doctor came by to talk to us and told us how wonderful he was doing, for being 8wks premature he was huge weighing in at 4lbs 1oz and 17.1" long. It wasn't until a few days later I was told he had severe torticollis, he could not straighten his arms or bring them into his chest, he was in a "muscle man" pose and would need therapy to correct it. I questioned at this time if it had anything to do with the doctor ramming him back inside me and pushing upward on his head well I was contracting downward....I was told no, absolutely not, that anything could have damaged his neck muscles but it was not the doctor.
After just shy of 4wks he was discharged from the hospital, they removed his feeding tube (how he was getting most of his feeds) that day and let him go even though he still wasn't able to maintain his body temperature. In summer he had to be bundled as if it was winter or his body temperature was too low. Though I was happy he was being discharged I wondered if it was too soon, but I was glad to be out of there with him.
At his 2wks NICU followup clinic we were informed he would need to be seen in clinic for therapy and I would be given the exercises to do at home with him to fix his neck muscles. At around 5 months even though his neck muscles were better and he was starting to move them more freely he was lagging on other skills he should have developed and was moved to CCAC. This was our first break, since my in-laws lived in Toronto and we lived in Mississauga they cheated and put us on both waiting lists for therapy. The thought was we would go with whoever came through first. Toronto phoned a few days later and set up an intake appointment for the following week, Mississauga told us we were added to their waiting list.
Toronto was wonderful, we were up front with our worker and she told us that they would hide everything and not communicate with Mississauga so they would not know he was receiving care in Toronto and as soon as they had a spot we would switch everything over. Nicky received weekly therapy and was making very slow progress, so slow that when we went back for his discharge appointment at the NICU clinic we were told he had Cerebral Palsy and would be sent to a neurologist to verify the diagnosis. I questioned at this time if it had anything to do with his birth trauma, being without adequate oxygen for over 1.5hrs and being forcefully shoved back inside me could not have been healthy. I also asked for an MRI or CT scan to verify it. I was told that a scan was useless, most cases of CP show no signs of damage and they usually do not know what caused it, but it most definitely had NOTHING to do with his birth, or the doctor or nurses "screw ups" as I called them.
We seen the neurologist a few weeks later, same clinic as the NICU one, and she told me word for word what they said and agreed he has spastic diplegia cerebral palsy. He continued with CCAC Toronto and continued with intense therapy, his therapist did it at the grandparents place and we did therapy 20mins 3-5 times a day. In December that same year, 3 months after his diagnosis, Nicky had a seizure and I rushed him to hospital..the same one where his clinic was located and he was delivered. This is when I made the biggest mistake of my life, when the doctor asked WHY he had CP I told him flat out that I thought it was from the screw ups the nurse and OB made. He noted this on the file and after a CT scan I left with a discharge sheet that said "mom thinks hospital caused CP....CT scan normal". After reading that my heart sank, I accused the nurse and doctor of harming my child and from what the ER doctor was saying I did so in error. He set us up with an EEG a few days later up stairs to see if they could see any seizure activity, if they did they would start medication, if not they would wait but if he had one more within a year they would treat for a seizure disorder because it's common in CP kids.
After a lengthy and wonder appointment with the EEG tech, who came in from Sick Kids, even she raised concerns and said as far as she is concerned after hearing how horrible they were at his delivery that she too believed they caused it and told me to think hard about launching a lawsuit because his care would be very expensive and if they caused it they should have to take some responsibility for his care too. I kept this in the back of my mind but really it was my word against theirs, after all the CT was "normal" so how could I prove they caused it? ALl my research showed the CP caused by O2 deprivation leaves visible abnormalities on brain scans.
The follow year was good, he progressed even more, he was finally rolling over a bit and was trying to stand. A few months into the new year though he started having head pain, one day he just started screaming and would not stop, he was grabbing his head with this look of fear and pain in his eyes. I thought he was dying! I rushed him to Sick Kids, after all if he was in serious trouble that was where he needed to be, it was a million times better for emergencies than his hospital. This was the break I needed, but I was not prepared for it, he was in so much pain their best guesses was he developed hydrocephalus or more unlikely but still the second best guess a tumor. Thankfully it was neither, it was a migraine, but nothing could prepare me for what they were going to say. "His scan shows typical CP damage" I looked at him like he had two heads "excuse me? that's not possible, he had a scan in December and it was normal", they called his hospital to demand the report, something wasn't adding up, it was even worse when they claimed they must have "lost" the scan and report. Soon a neurologist came in to see us and told me the devastating news "Your son has severe periventricular leukomalacia, or PVL, there is no signs of any bleeds, new or old, and is typical of children who suffered from the serious and prolonged distress you described that happened at birth. I will be honest, as far as I am concerned with the facts you presented, and the his hospital doing the impossible and losing the records of his scan, it was caused by severe birth trauma. If I were you, I would get a lawyer."
It was even worse was when he told me how bad the damage was "I have never seen PVL this bad in a child who has survived the NICU, you have to be prepared for what is going to come. I'm sorry but he with this amount of damage the outlook isn't that great, severe quad spastic cerebral palsy is the most likely outcome. It is unlikely he will talk, crawl, walk, he has a high chance of being deaf and having vision problems, and less than 1% have normal intelligence. I'm sorry." Little did he know that Nicky was already doing some of this, he thought the whole time he was talking about Matthew who was sleeping in his stroller and not the child who was commando crawling, pulling himself to a stand, and talking up a storm. When he found out he was talking about Nicky he left the room to make sure he has the right scan and the right child. When he finally came back in he told me that we were lucky, very lucky, and as far as he was concerned the only reason he was doing so well was because of the hospital trying to deny anything was wrong and cover up their mistakes. After all if he was diagnosed with the severe PVL he had at birth he would not be receiving intense treatment, he would be receiving palliative therapy as there was little to no hope of improving.
Of course we continued with therapy, no one was going to give up, not when he was still progressing. His therapist made a point of always reporting that he was still improving and had not plateaued. As long as he didn't plateau his level of therapy would not drop off under her care. CCAC though only does home care until 2yrs old and he was quickly approaching that milestone, and of course nearing it something funny happened, Mississauga FINALLY called about giving him therapy, only because his second birthday was around the corner it was POINTLESS for them to start therapy and he would just be referred to another program that deals with kids 2yrs on. His therapist though had moved to refer us to Silver Creek, a therapeutic school for special needs children, and we were waiting for the acceptance letter. That program didn't start until September though, 4 months after his second birthday, so Toronto agreed to keep up with his therapy as long as they could so he would have no long breaks in it. It was at this point they also decided to actually harass Mississauga and try to get them to take on his after 2 care until we found out if he was going to Silver Creek.
We got an appointment at the facility in Mississauga at the end of June and were told he would start therapy in July. Toronto discharged. After a full assessment and reviewing his records, now with the "cerebral palsy secondary to severe PVL" diagnosis, they decided that because of his dx, even though he hadn't plateaued and was doing better than expected, that they would only be able to offer him a one day a week 6wks on 6 wks off rotating SLT, OT, and PT...that meant SLT wk 1 & 2, OT wk 3 & 4, and PT wk 5 & 6, and nothing for 6wks before the cycle started again. We knew already he need to maintain an INTENSE schedule to continue to progress but they refused to give it, his dx dictated his outcome which meant intense was futile! We were told to take it or leave it, a few days later he was accepted for sure to Silver Creek so I told them we would take it, we just went telling them we were only taking it for the summer. Sadly though even though we were were told it would start ASAP we were informed that NOPE they are on holiday for the summer and he would get nothing until the end of July to beginning of August....which was a lie, he received nothing except for the daily therapy we gave him until he went to Silver Creek.
Silver Creek was the blessing we were looking for, but it stretched us to our limits and we needed subsidy, to be bused on top of it he had to be dropped off at his grandparents because we lived in the wrong city. After fighting with subsidy they finally had to ask Toronto if they could cover it for him as the centre falls under them and would be stealing a space from a Toronto child. We needed to jump through hoops, lots of them, to only get a very small portion to be covered...but any little bit helps right? For 2yrs we paid out of pocket to ensure he received the intense, and daily, therapy he needed.
If left to Mississauga he would have received NO therapy until after his second birthday and only the smallest amount that they could spare. Because of lies from his hospital we were able to get the therapy amount a "normal" child with delays would have got. If he would have been dxed properly at the start Toronto would have offered the same thing the after 2 care in Mississauga offered us. We were lucky, very lucky, time and time again, because of mistakes and lies we were able to secure the BEST for our son for the first two years. For the next two years, because we wouldn't settle for less, he still received the BEST care even if we did have to pay for it. He has now graduated from Silver Creek and moved onto another wonderful program, he's at Bloorview's school again receiving only the BEST care possible.
If left to the medical system, and up to a diagnosis written on a piece of paper my son would NOT be where he is today. This is a known fact. With the amount of brain damage and other problems he has intense therapy and proper care would have been seen as futile, he should not be where he is at right now, by statistics he should be a completely different child. Yes he still has a host of medical problems but without the therapy he received they would have been a lot worse. His core muscles were strengthened which has helped enormously with his breathing and feeding issues since most of the problems stem from weakened muscles. The therapy reduced spasticity which broke the usual daily spasms that left him screaming in pain. Intense and proper therapy, in my humble opinion, made him the person he is today and allowed him a chance at a "normal" life. I would not even want to glimpse at his future had he not received this therapy and this chance, and I am glad he was born to us, parents who would not settle for what a piece of paper says he deserves but settled for what a normal child or adult would have been given.
My Nick walks, and rides, and climbs
Not only does he talk but he SINGS (Batman to Divine Brown!)
And after defeating his fear of water...he SWIMS!
He is worthy, he is worthy of every second of therapy he can get, worthy of every last penny the world has, and worth every breath that he takes....and is as worthy as any "normal" person at a chance to live a long and fulfilling life.
He does not know that he "can't" do things, we will never tell him that something is impossible, as long as he believes he can, HE WILL, and he and every child like him deserves all the support they can receive to ensure they have a chance to TRY.
(Nicholas has: Spastic Diplegia Cerebral Palsy with weakened trunk muscles, severe PVL, a large pineal cyst, mild tachycardia, obstructive sleep apnea, extra pouch of skin in his throat, reoccurring aspiration pneumonia, Chronic inflammation of the lungs w/ chronic infiltrates (lung disease), chronic pneumonia, asthma, GERD, Vit K malabsorbtion due to bowel issues, thalassemia trait, chronic migraine, muscle spasms among other minor issues. Besides being in a wheelchair most of the time he looks and acts like any other NORMAL child, unless he's ill, and most people would never guess that he has medical issues)
