Tucker's Story

Dave and I met in the summer of 2001, our love quickly blossomed and we were married in May of 2003. In February of 2005, a month earlier than expected, we gave birth to our first child, a daughter, "Tori". We were over the moon! In November 2005, when Tori was nine months old, we found out that we were pregnant again - yes, we had been trying! Then on December 22nd, 2005, we got our Christmas present early, we were told that we were expecting fraternal twins. I was elated!! I think Dave was happy once he pulled his jaw off of the floor.

The pregnancy was uneventful for the most part, my contractions started at 31 weeks and I was given a shot to help develop their lungs - the doctors figured that twins would most definitely be early. The twins must have been excited to meet us and made their appearance six weeks earlier than expected at McMaster University Medical Centre. Tucker David Patterson was born on Wednesday, July 5th, 2006, at 4:35pm - 17 minutes after his twin sister 'Avery Rose'. Due to their early arrival both twins were ventilated and on CPAP for a couple of days in the level III NICU. After about three and a half weeks, Tucker was sent to a level II NICU at St. Joseph's Hospital - my twins were separated for the first time. It was very hard to juggle our days with the twins at different hospitals and our 16 month old daughter -Tori, at home, it was an extremely emotional time. A week later, Avery was also sent to the level II NICU at St. Joseph's - the twins were reunited. Tucker seemed to be thriving and was discharged - although a happy day for us bringing our son home to meet his sister and his dog, "Nikita" it was hard to leave Avery in the NICU. Tori embraced Tucker immediately, but I think she thought he wasn't staying. Nikita became very protective of the new addition. Finally, what seemed like eternity, on August 3rd, 2006, Avery was brought home, this was how it was supposed to be, all of us together. Tori was surprised when the second baby 'appeared' and I think she feared that we'd keep bringing home babies when we went out.

Like all parents and families with twins can attest, the first three months are a complete haze. Then suddenly around month 3, a light seems to get turned on and everything falls into place. Don't get me wrong it was still absolute chaos, but it was manageable - probably because our mothers came to help out. Thank goodness for an upright freezer and a mother-in-law who kept it stocked!

On November 1st, 2006, while at home in the living room, I fell while holding Avery - I completely protected her, but destroyed my left knee in the process and required reconstructive knee surgery, which was performed in June of 2007. So, the children got to see their grandmothers quite a bit during the twins first year as I wasn't able to walk without crutches for the first two months and then I wasn't supposed to carry them while walking until my leg got stronger. After my surgery, and extensive physiotherapy, I returned to work.

The twins seemed to lag a little behind on their milestones and their pediatrician - Dr. MacNay and I attributed it to them being 6 weeks premature. Tucker was always a 'spitter' after his feeds, but it seemed to get worse rather than better? When Tucker was about 7-8 months old, I started noticing abnormal hair growth on his legs; the hair was blonde, but thick and course. Around the time that Tucker was nine months, the spitting had turned into projectile vomiting. Dr. MacNay diagnosed it as 'reflux' and Tucker was prescribed medication to help settle the acid, he was also sent for a basic blood test to check his hormone levels as the hair that had started on his legs was now at the base of his back. We tried the reflux medication for three months, and then weaned him off as advised, things seemed to be corrected, and with the exception of being a bit delayed in hitting the milestones, all seemed fine. Then within a month, the vomiting returned with a vengeance. Back to the doctors we went in August 2007. He was re-prescribed the original medicine as it had helped in the past and we were to reassess over the next six months. I could see Tucker was continuing to lose weight, and his vomiting was so regular we could set up a camcorder to show Tucker's vomiting 'episodes'. Tucker was still not able to crawl, or get himself into a sitting or lying down position without our assistance. In November 2007, I brought Tucker back to the pediatrician because he was loosing so much weight, not able to sit up unaided, no interest in crawling, he was starting to get further and further behind. We were referred to a G.I doctor at McMaster Children's Hospital - Dr. Issenman. The day after our first appointment with Dr. Issenman, Tucker was vomiting continuously, he was pale and lethargic. I left work and brought Tucker the McMaster Hospital. The next day, Dr. Issenman advised that we would admit Tucker in hopes of him being seen by a variety of doctors: G.I., metabolic, genetics, neuromuscular, endocrinology, along with many residents as it is a teaching hospital. Well after a weeks admission and a barrage of tests, we were told that Tucker was a 'medical mystery?' Now we wait for the tests to come back. Tucker was sedated for an endoscopy in December 2007, that confirmed he did have reflux and we were asked to consider a clinical study for reflux - Tucker entered the study in January of 2008 and it was completed in March of 2008. What that study concluded was that Tucker had severe reflux and was prescribed yet another medication upon completion of the study. The reflux seemed to subside but there were so many questions the reflux didn't answer: the tufts of hair on his back that were now at the base of his neck and continuing down his spine to meet the tufts of hair at his lower back, his unusual sleeping pattern, his hypotonia, ataxia, failure to thrive (he always got to about 9.7kgs and would fail back down to between 9.2 - 9.4kgs.) Unlike his sisters who slept through the night from 3 months of age, Tucker had his very own sleeping pattern - which at best was consistent. He would go to bed between 7-8pm, and wake up around 9-9:30pm, he would then wake up nearly every hour after that until about 4am when he seemed to be so exhausted he'd sleep until about 7am and would be up. This didn't happen once or twice a week, this was his daily pattern from about 6 months of age. Meals times were exhausting as we could present a smorgasbord of foods only to have them hit away and Tucker would be screaming - meal times were supposed be a time to discuss the day's events - a happy time; ours was a daily battle at all meal times. Although we don't compare our children to each other, Tucker and Avery were given the same love, attention and opportunities, Avery was thriving and Tucker was not. It was so frustrating, and soon enough Tucker's failing to thrive became more evident as when we would be out, we were often being asked the ages of our children as it looked like I had had three pregnancies. Then when people were told that Avery and Tucker were twins people did not believe us, and the confused look on their faces said what I already knew... something was wrong. After Tucker's admission in November 2007, the doctor's had prepared us that we may never know what was 'wrong' with Tucker like so many other parents. This was unacceptable to me.

I knew there were sick children out there, you see them on the television when Sick Kids promotes their fundraisers - I kept trying to be positive as Tucker wasn't presenting as an extremely unwell child, just one behind the milestones with some issues no one could explain. I was afraid that Tucker would be the child that may go undiagnosed and it would be too late to help him so I continued to advocate as he couldn't speak for himself. In November 2007, an order was made for Tucker to receive a non-urgent MRI (magnetic resonance imaging), he was on a 2 year waiting list. I understood the constraints placed on the medical system, but I wouldn't accept it.

In 2008, Tucker continued not eating, and then in the spring, he stopped drinking as well. In early May 2008, I brought Tucker back to the Dr. MacNay with my concerns of him continuing on the downward trend, and I also believed at times he was having vision problems - I asked that he be referred to an optometrist. By the end of May, Tucker seemed to have caught a bug and was admitted again to McMaster Children's Hospital due to severe dehydration, not because I wasn't trying - Dave and I would actually try to syringe water and Pedialyte into him - I don't know where he found the strength to fight our attempts to help him. He was so frail and spent about 5 minutes awake and then would sleep for hours, it was so scary. By the end of the week, after being on constant intravenous, Tucker seemed to get some colour and life back and we were discharged the questions as to why were still unanswered. By the end of June 2008, I knew Tucker was having some problems yet again, but he was also teething, so when he saw Dr. MacNay in the beginning of July it was mentioned, but so was the teething, so we decided to wait and see and agreed that no action was going to be taken at this time. By July 23rd, 2008, I had some serious concerns and Dr. MacNay saw Tucker right away and it was decided he needed to be admitted back to Mac. Here we go again.

On July 26th, 2008, a bed opened up for Tucker and we returned to what was quickly becoming like a second home - McMaster Children's Hospital. This time, Tucker was admitted to the recently renovated 3B ward. On Monday, I was advised that Tucker had an appointment with Dr. Isaza, an optometrist at Mac. So, away we went to Dr. Isaza's clinic. She determined that Tucker could see objects up close, but because he still doesn't speak there isn't any way to know for sure, she put eye drops in his eyes and we waited about 20 minutes for them to dilate the pupils so she could get a look into his eye. After looking into his eyes, Dr. Isaza told me the first piece of bad news we would receive during this stay. Tucker's optical nerves were white, know as Optical Atrophy (they are supposed to be pink). She further explained that there are only three causes for this condition: birth defect, mass or tumour. I feel the tears swelling up. I leave the office after making a follow up appointment and I call Dave at work. As I return to Tucker's room, I swear that the nurses had already been informed. I was told that they were trying to schedule Tucker's MRI immediately. That day was unavailable and we were told his MRI would be on Wednesday, July 30th, 2008. We pray, cry and hope for the best of our 3 options - but really, which one is the best case scenario? We were initially told that the MRI would only be of his eye orbit's and brain. I inquired about the MRI of his spine and the muscle biopsy that were initially ordered and had been moved forward and scheduled on September 3rd, 2008. I was told that they couldn't justify a 4 hour MRI/muscle biopsy being done on an urgent order. When we went down with Tucker to the MRI clinic, I advocated for my son... could they not try to do the MRI of everything at once: the brain, spine, eye orbit's, muscle and skin biopsies so that he'd only have to be sedated once and not require another pre-op with an anesthetist and tie up another MRI appointment? The doctor said she'd do what she could. Dave and I held Tucker's hand, I sung him the Brahm's Lullaby just as I have since the twins were in utero, and we watched Tucker drift off to sleep. Again, the tears streamed down my face, for Dave and I knew we were about to get some answers to the many questions we've had over the past year and a half - but we knew we weren't going to like them.

After the MRI, muscle and skin biopsies, Dr. Tarnopolsky spent some time speaking with us, but it was in a loud environment, emotions were running high and all we basically got out of it was that there were some abnormalities in Tucker's brain and we were definitely looking at a Mitochondrial Disease and we would have more answers after the results of the biopsies returned. Some of the initial pathology results would be back within two weeks and then a few more would be returned each week after that - we should have a Diagnosis by the end of August. Later that day, I think, Tucker had an NG tube inserted in his nose and down into his stomach to supplement his feeds as he was not eating at all (even the favourites we depended on weren't interesting him) and his barely drinking.

Well, my head was spinning, anyone who knows me knows that I don't handle the 'I don't knows or maybe's' very well, give it to me straight - yes or no. I asked for a doctors conference to explain the MRI. On Friday, August 1st, 2008 my request was granted and we met in the ward 3C conference room with Dr. Tarnopolosky, a social worker and some of the residents involved with Tucker's care. Dr. Tarnopolsky started by talking about Mitochondria and the duties they perform. He then told us that Tucker's MRI showed that he had abnormalities in his brain: the basal ganglia, cerebellum and medulla as well as the syrinx. All of this pointed to a Mitochondrial Disease, and he briefly mentioned Leigh's Disease (which I had never heard of before) and a couple of other conditions, but said that we'd know more once we got the test results back from the biopsies. Dr. Tarnopolsky told us we should consider having a G tube surgically inserted to help Tucker's feeds and Dave and I had already discussed that option with Tucker's pediatrician and agreed that it would be in Tucker's best interest. He also suggested that we give Tucker a Mitochondrial Cocktail which consisted of Riboflavin, Vitamin E, Co Q10 Enzyme, Alpha Lipoic Acid and Creatine Powder - we agreed, as we were explained that this wouldn't harm him in any way. We accompanied Dr. Tarnopolsky down to his office and he provided us with some literature, "Understanding and Coping with Mitochondrial Disease - A guide for patients and parents". We returned to Tucker's room more confused than before because I think we thought we'd have some concrete answers, but Mitochondrial Disease has such a broad spectrum and we didn't really know where Tucker was on that spectrum.

Dave continued to be hopefully optimistic and I, well was not so optimistic. For a very long time, I had known something was not right, but didn't know what - I thought that we may have a child with special needs. I wasn't able to sleep, my mind continued to race and I had this tight knot in my stomach that only got worse after Tucker's ophthalmologist's appointment.

On Wednesday, August 6th, 2008, Tucker was sedated for the third time and a G tube was surgically inserted into his stomach to supplement his feeds and assist in giving him his 'Mito Cocktail'. He was on antibiotics after the surgery and soon I discovered that along with his malodorous stools, there was blood. The nurses took stool samples ordered by the doctors. On August 10th, the day we were initially told we were being discharged, it was confirmed that Tucker had C Difficile that was most likely contracted as a result of the antibiotics given after his surgery - Tucker was put into isolation. My poor little boy, how cruel and unfair to treat a boy who welcomes everyone with a smile. Later in the week, after speaking with doctors from Infectious Control, we were told we could go home on Friday as long as Tucker was tolerating his feeds.

On Friday, August 15th, 2008, we were prepared to be discharged and waited for what seemed like days until just after noon, a resident came in and asked if Dave and I could attend a doctor's conference at 2pm? I told her Dave was at work, and arrangements were made for Dave to return to Mac to listen to what the doctors wanted to tell us - I knew this wasn't good. At the doctor's conference we were informed that our brave little hero had a Mitochondrial Disease known as "Leigh's Syndrome - Complex IV". Leigh's Syndrome is one of the severe forms Mitochondrial Disease which often has degradation of motor skills and eventually death within one to three years of onset... our world as we know it falls apart. Tucker is discharged and we take him home to see his sisters. (you can read more about this day in Mommy's Blog)

Through this journey we've learned that each day is a gift and life can be short. The knowledge we want to share with everyone is something simple and something everyone already knows but may take for granted...

Hug your children and tell them how much you love them!

We are now trying to cram a lifetime of memories into whatever time we're lucky to have with Tucker, and we are blessed - he is an adorable, affectionate, and extremely loving child that can melt anyone's heart, he is truly a joy!