Welcoming Baby Katie Rose Rodgers

On August 21, 2012 at 9.02am, the world became a better place, a brighter place, as Katie Rose Rodgers was now in it. After a long 30 hour labour, Katie was delivered naturally and she was nothing short of perfect….all 9lbs 13oz of her. She cried, Mummy cried, Daddy cried. We were all together. We were complete. Katie changed our lives in an instant. Hopes for her future were hoped for and dreams were dreamed for her. For us, all of our hopes and dreams had just come true.

Katie was a full term baby. All of her tests came back clear and we were ready to start this wonderful chapter in our lives. Nappies, night time feeds … all of it.

Home Time

It was a hot hot summer day and Katie was dressed in a little pink “I love Dad” vest as we bundled her into her car seat and brought our precious cargo home. Mummy stayed in the back seat with her. Protection mode had already kicked in. It would never leave. Once we got home, we were so thrilled. We introduced Katie to her home, her bed and surrounded her with pure love. She gave it back just as much.

Katie fed well and gained weight constantly. Her doctor was always pleased with her at all of her check ups.

Weeks and months passed and everything was as it should be, head control came, first smiles, giggles (lots of giggles), tummy time, rolling over, sitting up, solid foods, splashing in the bath, playing with toys, playing with mummy and daddy, crawling, pulling up to stand, cruising, mama, dada, baba, gaga, hiya, clapping hands, following commands, understanding mummy and daddy, cuddles and kisses.

Katie’s first birthday arrived and she was doing all of the above. We had no concerns about our little girl, nor did her doctor.

By now, as parents, we were just waiting for her to let go of the furniture and stand alone and take those first steps that every parent dreams of seeing. The 15 month mark hit and nothing. No standing alone, no first steps. We took her to a paediatrician who told us that where she was at developmentally was perfectly normal.

Something is not quite right with our little girl

More months passed. The 17 month mark came and no change. No progression with vocabulary either. Worry was creeping in to our minds. As much as we didn’t want to think anything was wrong, we began to believe that there was an issue. At this stage however, there had been no regression either.

Things took a dramatic turn when Katie was 19 months old. Following a viral eye infection, Katie stopped smiling, stopped following commands, stopped laughing, stopped performing any actions that she had learned such as clapping hands and blowing kisses etc. The biggest tell tale sign was that she stopped crying. She jammed her fingers in the drawer one day and I waited for the screech….but nothing. She was vacant. It was as if a light had gone out in her. It was not obvious to others (most of whom commended her for being such a good child for not crying), but to her Mummy and Daddy it was clear as day that something was not right. Katie as we knew her was absent.

Time To Go To The Hospital

Again, we took her to the paediatrician. She sent us home again without any major cause for concern. She put it down to the fact that there were newborn twins now in the house and Katie was “put out” by the new arrivals. We knew different and drove straight to the Children’s Hospital with Katie and our 3 week old twins in tow.

Immediately, investigations started taking place with very highly trained medical professional noticing some abnormalities straight away. Things that had not been picked up by a senior Paediatrician just hours earlier were now cause for concern amongst young nurses. Things like pupil reaction times were slightly abnormal.

Within a few hours we were told we were right to take her in and we would not be going home. The term “Mitochondrial Disease” was mentioned within a matter of hours on the day we brought her in .

More Tests

Over the following 5 days everything from blood work, MRI, EEG, Lumbar Puncture, play specialist, physiotherapy, Occupational Therapy, Neurology and Metabolic Consult took place. Over these days we kept hearing that term “Mitochondrial Disease” being mentioned. We had never heard of it before Katie’s admission. Infact, we could barely pronounce it. We questioned what it meant at every mention of it and began to realise that it really wasn’t good, though, we still didn’t really understand what it was or what it meant or the mechanics of it at all.

Blood work and lumbar puncture came back showing elevated lactate and we were informed that was a definite sign of Mito but in and of itself was not enough to diagnose. The big one was the MRI.

The night before the MRI, we prayed and prayed for a brain tumour. At least that could be potentially removed we thought. The MRI day came and a few hours after it had taken place the result came back and the doctor entered the room. We were told that Katie has Leigh’s Disease, a rare and very severe form of Mitochondrial Disease. The words “no cure” and “childhood death” soon followed. Our lives were shattered, our hearts were broken and we fell to pieces there and then.

The “nothing we can do” part was one of the hardest things to hear. It was too hard to accept. Nothing that they could even try? We couldn’t comprehend this. It seemed too cruel.

Katie would have to have a muscle and skin biopsy a week later in order to narrow down the affected complex and also to attempt to locate the mutated gene. Unfortunately, the muscle biopsy was a poor sample and they never did get concrete results from it. We asked how long Katie had left in this world? We asked if she would see her 2nd birthday and were told that she probably would. When asked if she would see her 3rd, the doctor said she didn’t know. In saying that she said she might see her 7th and 8th, there is just no way of knowing. That is what we were told. From that moment on, it was like we were living in the midst of a ticking time bomb…we just had no idea how long we had left or what tomorrow would bring.

The Big Move

My husband and I had been residing in Vancouver, Canada at for almost 5 years at the time of Katie’s diagnosis. She was born there and diagnosed there and our family probably would still be there had we not received this devastating diagnosis for our baby.

As soon as we knew the severity of Katie’s diagnosis, we decided to move back home to Ireland. We didn’t even need to think twice about it. Within 2 weeks, we literally packed up our things and prepared for our family to go home. Katie deserved to be surrounded by the love of everyone who wanted to shower her with it. Katie was welcomed home with kisses and cuddles from her grandparents, aunties, uncles, godparents, cousins and friends who had so much love to give.

Love Is The Best Medicine

They say laughter is the best medicine but in Katie’s case, an ambundance of love proved to work wonders. Once Katie set foot in Ireland and was surrounded by all of this unconditional love, little miracles began to occur. From a smile, to giggles and clapping hands to blowing kisses, bit by bit our little Katie’s light began to shine bright again.

Within 2 months of being home, Katie had regained all of her actions, her smile was lighting up a room, her giggles were infectious. Her understanding grew and grew and she learned more actions and even some sign language. Her mobility was steady and her fine motor skills were improving greatly. She got excited at the sound of a chocolate bar wrapper and loved to get a treat. Her ability to eat was not affected although her appetite was not great. At one point, her physio felt that she may make an attempt to walk independently soon.

However, a small sniffly nose set her back quite a lot in terms of mobility. Her balance became affected and she did not gain the ability to walk but continued to crawl and cruise. Hand tremors and issues keeping herself upright in the bath become a little more frequent following the sniffle. Again, this just goes to show how something so so simple can affect a child with mito drastically and without warning.

It’ll Be Lonely This Christmas Without You To Hold

On December 8th, as Katie was taking a drink at dinner, she had an aspiration episode. This was something we had never experienced before and was the scariest thing we had witnessed up until that point. Katie had been so unbelievably well that we were not prepared for something like that to happen. Although I am sure a parent is never prepared to witness that type of scene. Extremely concerned, we took Katie to Temple Street Children’s Hospital in Dublin.

Unable to have any nourishment, Katie began to get extremely weak and tired. The doctors all but guaranteed us that we would be home for Christmas and Katie would regain strength once she was getting some nutrition into her system. Nobody could have prepared for what occurred on December 11, 2014. Katie began to have seizures. She had never had any before. They started to occur no more than a few minutes apart. Finally, she went into a seizure and she was not coming out of it. We knew something was very wrong.

Eventually, we were told that there was nothing more that they could do for our little darling. They asked if we wished for her to be ventilated overnight to keep her alive so that family could make the 4 hour journey down to say their last goodbye to our precious Katie. We agreed to the ventilation and we were informed that she would not wake up from here on out. Of course, little miracle Katie did not agree with the doctor! She did wake up, during the night. She woke up and waved when we asked her to and let us know she could hear us. Everyone said their goodbyes that night and the next morning the time had come to take her off the ventilator. Katie was taken off ventilation at 11.30am and remained with us for 6 hours for cuddles with Mummy and Daddy. We let her know how proud we were of her and how it was OK for her to go from this world. And at 5.30pm on December 12, 2014, Katie Rose Rodgers transitioned from being our Angel on Earth to our Angel in Heaven.

We miss our sweet little girl more than any words could ever come close to describing. Our hearts are forever broken. We cannot mend our broken hearts. We can however allow Katie to keep inspiring us just as she did every single day of her little life. We can raise awareness, we can fund research and hopefully one day we will find a cure.

Katie's Story