Archie's Story
Kevan and I would like to introduce you to one of the luckiest babies that you will ever meet, our son Archie. Archie was born on June 5th, 2012. He was a healthy 7lb 8oz baby with a perfect apgar score and an incredible set of vocal chords. We fell in love all over again. The name Archie was picked years in advance, but we were convinced this baby was another little girl, and the name Archie was going to be for beta fish numero 4. Our family was complete. A beautiful spirited 3 year old daughter Georgie and our wee boy Archie.
We brought Archie home and instantly realized that we had our work cut out for us. Archie cried a lot. His cry was just off though. If you asked our daughter she would say that Archie never stopped crying/screaming. Nappy changes were a mission, car rides were impossible, and ‘outings’ entailed a detailed precise army schedule, no hiccups allowed. I felt like he was the bad boyfriend you were always making excuses for. But we loved him so very much. He was my don’t mess with diva’!
But as any new mum you just get on with it. Life was never going to be as easy as it was with one child, the new baby will just have to adapt. As time went on though things didn’t get better as you would expect, things got worse. Archie was a horrible nurser, projectile vomited a lot, wouldn’t sleep lying down, was overly sensitive to everything from light to dark to hot to cold…and at first we just brushed it off. We just got lucky with Georgie. It’s pay back time. But as time went on we were becoming very concerned that something was really wrong with our baby.
Archie smiled a little Elvis smirk at 9 weeks, and I thought finally a smirk, then nothing. It came randomly and at nothing in particular. He cooed, but again, inconsistent and randomly. It was so different compared to Georgie. We thought he had torticollis as he had his head turned to one side all the time, so we did stretches with him. He also started doing a lot of superman poses, and was getting a bit jerky with his movements. I made him herbal baths and sleeping herbal pillows, surround sound beach music, swaddling. I tried everything. Then at 2 months I said to Kevan, “he should be holding his head up better”, as it kept dropping to one side. I actively began googling. Not a good thing, but at the same time it prepared me. I was on the verge of going crazy with worry and the not knowing.
Something wasn’t right.
There was something wrong with my baby.
I went to the Doctor’s quite a few times asking for help and for him to be looked at. He’s fine, he is gaining weight, no he is HUGE! That’s cause he nurses ALL DAY! Some babies throw up and cry. No one took me seriously.
I just got shrugged off as a nervous mother.
I was told he was tongue tied, he wasn’t I argued that he had acid reflux, they disagreed. I went to a breast feeding clinic in Toronto and even took Archie to see a chiropractor as I thought the problem was his neck.
But I knew. I knew it wasn’t his neck. But deep down those last few weeks I wasn’t ready. Mother’s know when something isn’t right with their baby, we know. Yet we get ignored and shoved off as if we aren’t qualified to know such things. Finally we were ready. Kevan and I decided to take him to the ER and demand answers. We got referred to a great pediatrician who saw me immediately (as kevan was working) and said his head is microcephalic (small) and she was concerned his brain wasn’t growing and told me she wanted him admitted to hospital ASAP. My heart dropped. I nearly collapsed in the doctors office. Archie was screaming, Georgie was crying, and I just stood there, in shock. My amazing mother in law had already booked a flight from Scotland the week before to come and help me cause she knew I was struggling, but Kevan and I called them that night and within an hour she lost all the money on her flight for Friday and had booked a flight for the next day. A life savour. I don’t know what either of us would of done if we were on our own.
If any of you are reading this and have a brain injured child, I don’t have to explain to you how we felt. Whole heartedly you will understand the pain, sadness, and anxiousness that we endured at the hospital over the period of weeks with testing and IV’s and questions from annoying students and sedations for MRI’s, EEG’s, muscle biopsies, skin biopsis etc etc. Even if you don’t have a brain injured child …. you can sympathize.
At 4.5 months Archie was diagnosed with Multi-Focal Diffused Cystic Encephalomalacia. A rare neurological disorder with a very poor prognosis. His MRI report showed that his wee head was full of cysts. There was just no brain there. He is diagnosed with severe spastic quadriplegic cerebral palsy, epilepsy, cortical vision impairment, development delay, gastritis, reflux. All of this is a result of his severe brain injury following an initially undiagnosed neonatal stroke, or possible congenital T.O.R.C.H infection in the third trimester. They thought it was a mitochondrial disease and if it was he wasn’t going to survive. We had to wait 6 months for the tests to come back…it was torture, waiting to hear if your baby would live. Thankfully we received the results from the muscle biopsy and skin biopsy which ruled out the rare metabolic disorder; Mitochondrial disease. The medical professionals we have seen however have given us such a pessimistic gloomy outlook. We were told that we should take Archie home and love him and not expect much else.
As you might as expect we were totally shell shocked, heartbroken and devastated. BUT we absolutely refuse to roll over and settle for this grim diagnosis without even trying. We left home with our wee Archie and came home with our little fighter and all that has changed is that we now know why he does what he does. He is such a little battler, hell half the neighbourhood can hear him! He has had a terrible sadness and traumatizing time the last few months and we are working at creating a positive, brain growing stimulating environment and most importantly a happy home for him. We can see in his little Elvis smirks that he is going to prove everyone wrong. He is so smart. He knows what’s up. It is just going to be a bumpy road. Our ‘normal’ world has been shaken and stirred, and now we need to create a new normal….what that is we don’t know….. how were going to do it…we don’t know…… will we want to go outside and scream…..probably…….will we scream at each other, most likely! But all we know is eventually we are going to run out of tears (we hope) and eventually Archie is going to run out of screaming (we hope) and that Kevan and I and Georgie are lucky to have each other and Archie is lucky to have us and be surrounded by amazing supportive friends and family.
