The Miley Movement

Hi I’m Tasmyn, mom to my beautiful Miley!

Miley was born in August 2023 and had a hard start to life, Miley was in an incubator for the first five days of her life she was

on oxygen and antibiotics.

All was well and we were discharged from the maternity hospital, Miley was in a good space health wise however we truly

struggled with what we were told was colic, Miley cried for a good couple of hours every single day for the first three months.

In September Miley had a fever and we took her through to A&E after waiting a good few hours and Miley having a “colic

moment” she was finally seen to and the nurse on duty had asked if her cry had always been like that, she has a high pitched

cry and definitely catches attention. The nurse then referred us to see a Paediatrician regarding her cry, once again we were

sent away with being told that it was colic, a month later Miley had a follow up appointment regarding feeding and the cry, the

Paediatrician was then concerned about a ridge that had started to form in the front top of her head, he had requested a CT

scan, the CT scan had come back and nothing was noted as a red flag. In late November we had Miley’s appointment with her

public health nurse, we had then taken note that her head circumference hadn’t grown and Miley’s GP was informed. In early

December 2023 Miley was then booked an appointment back with the Paediatrician at the hospital and a decision to do an

MRI scan was made. Both Daddy and I got Miley ready and brought her into hospital where she was admitted to have the MRI

scan done. Miley had fasted the first day and we played the waiting game until such a time they could do the scan,

unfortunately after hours and hours of fasting and waiting we were told that it couldn’t be done that day and that we’d have to

wait until the following day and start fasting Miley again. The next day came and we managed to get the scan done. We were

moved to a room where we were told to wait on the results. Later that evening, the results were in and the Pediatrician came

in with the news that we would have to see a neurologist the next day as her brain activity was not normal.

The following day a neurologist and her team came through to deliver the worst news any parents would ever want to hear, we

were told that Miley had severe brain damage and that she had a good few diagnosis’ which are Microcephaly,

Encephalomalacia and Cerebral Palsy. It was absolutely devastating and we really struggled with the news of Miley’s

condition. We spent two weeks in hospital while they ran a whole bunch of tests, bloods and all the things that go with a new

diagnosis.

Time went on and Miley was well and we were managing her condition with multiple medications. In January 2024 Miley was

admitted back into hospital for a high temperature along with a small bit of aspiration.

She stayed in hospital for a week and once she had returned to her old self she was discharged. In February she was admitted

back into hospital for five days with Covid 19, this was a tough one as for the first time ever Miley was very sick, it was so

incredibly hard to watch her go through that, after being on antibiotics for some time she was finally well and back to herself. A

week and a bit later Miley had her Vaccinations done and unfortunately had an awful reaction to the vaccines and at home she

had a bit of aspiration and required chest compressions by myself and Dad , and landed back in hospital for a further three

days. Once the reaction had settled she was discharged yet again. All was very well for some time and we had been handed

over to the disability network team and Enable Ireland.

The services have been amazing and we have made a lot of progress with making Miley’s life as comfortable as possible and

ensuring her little body gets everything it needs in order to grow correctly. She has had custom seating done and we are

waiting for her molded pram. She has had casting done so her legs and ankles grow correctly. Miley has had a good few x

rays done on her chest, hips and spine. We are waiting for her splints to be made to draw her thumbs out and also waiting for

equipment to help with supported standing.

She has been so incredibly strong and so patient with all of the appointments that we have to attend.

On Sunday the 9th of June 2024 Miley had her first seizure and had stopped breathing, I performed CPR on her and after two

minutes of Chest compressions Miley started screaming and was gasping for air. We are back in hospital and she has had a

few more tests done, she has been diagnosed with Epilepsy. We now have a good few bits of medication that we need to add

to her current list and some of the medication requires training. Miley is stable and is smiling at all the nurses. Her heart rate

and blood sugars are still a slight bit erratic and are being closely monitored.

We do not know what the future holds for our precious Miley , but for now we are taking it day by day.