The Summer of 2018 was one of the best this country had ever seen, & we loved to take our daughter, Samhradh, Irish for “Summer” to the beach. My parents were visiting from the States for her 2nd birthday & we loved showing them all of our favourite places in Clare. On Saturday, August 25th, we all went to Whitestrand Beach. Robin was meant to be in Germany with the work lads, but he missed his flight. It was so lovely & warm that we were all in our togs...Robin & I watched Samhradh splash in the tide pools while I sunned my bare 9 month pregnant belly...it was a moment of pure contentment in our lives & we acknowledged how lucky we were...I went for a swim while Robin pulled her on her boogie board in the waves. We always encouraged her to play in the water as we hoped she would love the beach as much as we do. We ate dinner out after going on a boat tour of the Cliffs. It was a perfect day with family.

On Monday, Samhradh seemed tired, falling asleep twice in the car as we went out to the Burren. We couldn’t keep up with my parents on the walk, & I was losing my patience as it seemed difficult for her...Late Tuesday night, she started having diarrhea. It continued into Wednesday & we all jokingly fought over who would change her nappy as it smelled so bad. It was our last day for an adventure before my parents left, so we went to Bunratty Castle. Samhradh mostly wanted to sit in her buggy...I again couldn’t understand why she was having such a difficult time with the steep steps in the castle...& being so heavily pregnant, felt annoyed to have to carry her up and down the narrow corridors.

By early Thursday morning, she was vomiting & very lethargic...she couldn’t hold anything down & I wished that my milk hadn’t dried up so I could nurse her...we all took turns holding her throughout the day & I went to work that evening as we thought that it was just a bad tummy bug. She was too sick for us to really say goodbye to my parents the following morning...I was able to book an appointment at the GP for the afternoon...we were on the fence about sending her to the hospital, but said that if her nappy wasn’t wet the next day, to take her in. She ate some food that evening & sat on her bean bag in the sun licking a popsicle Saturday morning, so again we thought she was on the mend...but the poor thing was suffering so bad, & we didn’t have a clue just how much.

By lunchtime, her nappy was still dry so I anxiously knew we had to go to Limerick...we were afraid we’d be waiting for hours or that I’d have to be separated from her. In those two years we had never spent a night away from her, & even though I kept meaning to plan a night-out for myself before our next baby came, it never happened. We packed the van just in case we had to stay the night. When we arrived, she was seen immediately & given IV fluids...the first of many needle punctures but we were all reassured by how well she looked from the outside & said “whew! Great! That’ll help! We’ll be home by tomorrow!”...but then her blood test came back & another doctor came...then another specialist...saying that Samhradh had HUS (haemolytic uremic syndrome) & was in acute kidney failure from likely E. coli poisoning...she would have to go to Temple St. Children’s hospital in Dublin urgently for life-saving dialysis.

By 9pm Samhradh & I were loaded up on the ambulance trolley, holding on to each other for dear life...full of fear but more so love... as Robin bid us farewell until he could drive up in the morning. We both went into the “zone”...a place of self-preservation positivity for us & for our daughter.
It was a bumpy ride but I was surprised how fast the time went by...we were taken upstairs to St. Michael’s C Ward & greeted by the most kind & gentle nurse Carmen that explained everything we could expect. Her calm & confident words assured me as she relayed the plan for the morning. Samhradh was to go for emergency surgery to have a peritoneal dialysis catheter & central line placed, so that treatment could begin immediately. They moved the cot out & brought in an adult sized bed for the two of us to fit in. Robin & I had just started to sleep in the other room when she night weaned in preparation for the baby, but with Samhradh being so sick, I just wanted to be as close as possible. There was a sofa pullout for Robin & as we were on isolation, we were lucky to have the space & privacy needed to rest. Samhradh & I managed a few hours of sleep between the hourly vital checks that we would grow so accustomed to over the next 3 weeks there. The nurses all said that she was the bravest & calmest 2 year old that they had ever seen.

The consultant arrived Sunday morning & further explained Samhradh’s condition & needs. She said that the E. Coli poisoning was a likely a very specific & rare strand called VTEC or “shiga toxin”. E. Coli can be found everywhere, but this particular strain comes from contaminated water or undercooked beef. For us, it would maybe go unnoticed or cause diarrhea, but in some children under the age of 5, it leads to HUS & kidney failure. The toxin is so severe that there is no cure & we’d never know exactly where it came from, although it would be investigated. The toxin would just have to run its’ course and can only be managed through dialysis and transfusions. It could cause her other major organ systems to fail, seizures or even a coma. She could need to be on dialysis for the rest of her life, or if we were lucky, we’d only need 2 weeks of dialysis for her kidneys to start working again.

They prepped her for surgery & Robin arrived in time before they carried her down the hall to the theatre. We were wrought with fear in how she would handle such a painful & invasive procedure without us by her side, but trusted that she was in their very skilled, compassionate & capable hands. She was gravely ill, but still so alert & full of love that we knew she could get through this. We could get through this. I finally let go of my tears into Robin’s arms as we waited for her to return.

The next 24 hours were very traumatic for us all. Samhradh came back from the theatre hysterical & inconsolable. She was writhing on the bed & not even “cuddling the bainne” would help. They were reluctant to give her morphine due to it possibly affecting her kidneys, but I asked for a small dose for something to help. She then thankfully slept through the first hours of setting up the dialysis. The machine would drain then fill her belly on hourly cycles to replace the work of her kidneys if they were functioning. We felt helpless as she lay in bed hooked up to this as well as a peripheral IV, central line for a blood draws and transfusions & all the monitors that we would become all too familiar with the alarms & beeps throughout the nights. She started having hallucinations that evening, was extremely restless & was sitting up in the bed saying she was “falling.” She was parched for thirst, but was on a strict fluid intake, so we couldn’t satisfy her pleas for water. She grew irritated, combative & perseverated on “water, water, water”...as a parent to see your child in so much pain & distress, you would do anything, anything to swap places.

Every hour the nurses would come in to “listen for the birdies,” to check her temperature, “listen for the horseys,” to check her blood pressure & shine a light in her pupils to monitor for any neurological decline. With the fluid restriction, we had to measure & calculate every ounce in and out...This would become our ritual morning, noon & night...they also had to remove sticky plasters, bandages & bags...draw blood & pull lines...over & over, day after day, checks night after night...silencing the sounds from the monitors & the dialysis unit as it pumped the fluid like the ebb & flow of the tides...I’ll never forget how her pupils would dilate in fear or pain...her swollen body & the smell of ketones on her breath, as I remembered from my days of working at the childrens’ hospital in Tampa. I had spent the better part of a decade on the other side, rehabilitating children like Samhradh, and knew how hospitals worked...but I had never been there as a parent... I now wish that I was less informative & more compassionate to those families... I felt like every little procedure was so painful & invasive to Samhradh’s innocent body, but we found ways to adapt...& we put every hope into the fact that her kidneys would turn on again in time.

For the next week she stayed on continuous dialysis, & although still so weak, we found ways to play in bed in between transfusions & naps. She wasn’t eating much, but thankfully enough to avoid a ng tube. By the end of the week, she still wasn’t producing any urine, but her blood levels were improving, so the docs cut her dialysis back for a few hours in the mornings. This meant that for the next week after rounds, we could take her outside in the buggy to the park. This really seemed to help us all turn the corner, as she was able to walk some & take in that fresh air that we all missed so much about our home in the country by the sea. It was difficult to see her so weak compared to the other seemingly healthy kids running around the playground, but every day she could do a bit more. It was the highlight of our day to get outside those four walls, as being on isolation & a measles outbreak limited visitors. The staff was very empathetic & allowed GiGi and Pappy to visit every Monday.

We felt that she was now stable enough for Robin to return to work, as we also knew how financially challenging this situation would be. We were ever so fortunate to receive funding from the Temple St. Foundation, as well as our dear friends & family to help pay for transportation for Robin & meals for me. Aunt Cathy & a few friends were also able to visit or bring me food. Messages, sticker & coloring books with cards of love & support started to flow in. All of this helped keep us going while separated & as we patiently waited for our own “pee party.”

By the end of week two, her labs were improving & she started to produce small amounts of urine, but I wasn’t going to be celebrating until we walked out that door. Robin came back for the weekends & was the voice of positivity we needed. We started to relax & have fun again. I was in week 38 of my pregnancy now & we had to make tentative plans for a Dublin delivery just in case. I had a lot of back pain, but was actually relieved with all the bed rest that Samhradh & I were able to get. We were worried however, as I had also tested positive for the VTEC, that there was the risk of transferring it to our newborn in delivery. I had really wanted a VBAC & knew now how important it would be to be able to care for Samhradh as well when we got home. I conferred with the consultants & was thankfully well supported for the VBAC.

It was a big day when the doctors discontinued the dialysis and she was soaking her nappies again. She was having issues with hypertension in the afternoons & evenings, but they said this was all a good sign that the kidneys were waking up. She started however having night terrors & literally climbing up the walls. I was afraid that the high blood pressure would continue to damage her kidneys, so the plan would be to get the dialysis catheter out & she would go home on the meds. She had to be woken up at 6am for breakfast, then fast until the surgery could be completed...but it took 3 days of fasting & waiting for the surgeon to be available as it was no longer an emergency. We were patient & persisted...after 3 weeks, we were just so grateful for her to be alive & going home...& that I hadn’t gone into labour yet!

Her catheter was removed the morning of Saturday, September 22nd & I was able to join her in the operating theatre, holding her hand as they placed the anaesthesia mask over her little face & her body fell limp into a deep sleep. Tears fell walking away back to the elevator, but I knew we’d see her smiling again. Robin had come to bring us home. They brought her back up to us within the hour. She was crying for me, but was not nearly in as much pain as before. We had a pizza party to celebrate & packed up to leave, saying farewell to the staff that had taken such good care of us. The staff & nurses at Temple St. were amazing. They explained everything fully and listened wholeheartedly. They knew that this was a shock for us, but were confident that she would continue to improve as they had seen it so many times before. St. Michael’s C Ward treats about 30-40 cases of HUS per year & most children make a full recovery. We felt like we were one of the lucky ones and were treated with so much care & respect at every point in this adventure.

It was so strange coming home, be in a big comfy bed! as the three weeks in Dublin felt like a time warp...but once home , I didn’t want to leave. It had been a month since I had seen the sea, or countryside...had a home-cooked meal or fresh nibbles from the garden...we had preparations to make for the new baby & we all lost weight...Samhradh an entire kilogram...it took some time for her to adjust as well & we were still worried about the hypertension. We had follow-ups scheduled in Limerick & I had my maternity checks on the same days. The staff went out of their way to accommodate us & help me plan for the VBAC even though we were still testing positive for the VTEC. I was 1 cm on October 3rd, & contractions had mildly started on the drive over, but I was in denial as I needed to get Samhradh through her appointment & home as well! Later that evening, my waters broke & the following morning, after pushing for 90 minutes, another healthy daughter, Lana, arrived into this world. Samhradh went to our dear friends’ house for the night & handled it very well, but we were all anxious to see each other the following morning & come home for good as a family of four.

The next few weeks were another big adjustment, but it was just so enjoyable to be at home together. After about a month, Samhradh’s levels normalised enough to get off the blood pressure medication. This seemed to make a big difference in her affect & her night terrors stopped. Robin took her to her follow-up appointment in Dublin & we were delighted to not have to go back for another year. In a few years, they will scan her kidneys to determine if there was any scarring. They will have to continue to monitor her for the rest of her life, as the full extent of the damage to her kidneys remains unknown. She could have further complications at any point, or especially with puberty, but we would rather remain hopeful that she won’t...& keep living on the bright side as she does so well.

We tried to show as much gratitude as possible in thanks for helping to save our daughter’s life, but words often fail...Samhradh loved her nurses & still talks about her time in the hospital. She likes to pretend to be “Nurse Suzy” to take care of her babies, placing bandages on them & saying “no ouchies”. They told us that she is too young to remember this trauma...& I can only hope that she will remember just the love & care shown to us from everyone that entered that room, in the flesh, or spirit...our village was with us every step of the way & we cannot express enough gratitude...it’s been hard with a new baby to spend as much time with her as I did in the hospital & so I love to watch Samhradh sleep next to us as we finally catch up on some rest this Winter...It’s hard not to worry about her or get anxious when the girls get sick...afraid that we’ll have to go through this again...I often wish none of this ever happened, but it made us come together closer as a family...& to slow down and live in the moment...it helped me appreciate our home ever the more...Samhradh helped me to grow, as a mother & a person, as she gracefully & bravely handled the worst of situations, as kids often do better than us.

And so for her, the staff & all the children & families of Temple St, I am going to walk/run/crawl the half marathon at Inis Mor this April. Anyone is welome to join me or please donate to help us reach our goal & give back to those that so selflessly give to those most in need.