Myself and Niamh are the very proud parents off ELLA Who was born on the 8/6/21 I have to start buy saying how very proud I am to be to this special little girl daddy… This an extreamly hard thing to have to put up for any dad so I do really appreciate anyone who takes the time to read this even for awareness even.
my daughter was born in June and during niamhs whole pregnancy she was fine. we had no issues with any scans or blood test.When ella was born at [email redacted] they noticed she had a Cleft palate.
Ella was then taking straight away from us and put in ICU in an incubator where she spent the next two months not eating or doing much only being fed fluids and formula threw NG tube. No doctor could figure out what was wrong with our perfect like baby.
We were told that Ella didn’t have much time left in June because she was so unwell and was not improving at all. We both were devastated to say the least, and due to her thin airway they wouldn’t be able to incubate-her her if she didn’t improve so a tracheostomy was the best decision or she wouldn’t be here today.
Ella also had a MRI which they found 3 cysts on her Brian which were B9 but have to be monitored threw out her life.
Ella has also had her NG tube removed and is also going for her fourth operation tomorrow to put in a peg feed. Which will allow us to feed Ella threw the bowl and not up a tube into her nose that goes into her belly.
She then had had to go threw surgery shortly after the tracheostomy was put in because she was born with what’s knows as a PDA The ductus arterioles is a normal blood vessel that connects two major arteries — the aorta and the pulmonary artery — that carry blood away from the heart. Because Ella’s still hadn’t closed it was necessary for the surgans to close it as her heart was working to heart. She went to crunlin we’re they closed the duct with a valve we’re she spent two nights in crumlin and was brought back to temple street childrens hospital.
We then found out after a very long 3 months wait that she had two syndromes.
Pierian Robin sequence is a syndrome that effects her having a thin airways,serious breathing &feeding issues, it also affects her Kneck/jaw/chin size everything inside her mouth is normal size which makes things difficult to all fit inside her mouth also.
Ellas second symdrome is called CTU2
There is only ten known cases in the whole world from the records we got from our genetics test the oldest living person with this condition is in South America and she’s 19 The issue with this is it cause seizures and dose lead to motor learning difficulty’s ie feeding/walking/ or basic daily needs.
Ella needs 24/7 care in case she’s pull her tracheostomy out as she’s reliant on it for breathing We don’t no if she’ll speak but Speech and language are doing their best in Temple Street hospital to help us. It’s still very early days for Ella but she’s progressing so good for us so far.
The doctors or any other medical professionals in the world don’t have alot off information about CTU2 because off how rare the syndrome is so they have advised us to just take it day by day which myself and mam are doing.
There could come a time we’re we have to travel abroad for medical needs for Ella but for the time being everything medically can be done here but for now ella just needs to get a home she can come home to and live with her mammy daddy and brother.
I worked as a healthcare assistant threw out the pandemic doing so much over time as the healthcare as in a mess while Niamh was on maternity leave.
I have been on Meath county council for ten years with no help what so ever and when I added my daughter to my application we were told no we don’t qualify for housing even tho our circumstances have changed dramatically and we are not earning a full-time wage each anymore whatsoever because we spend every day in Temple street.
When Ella is discharge from hospital she’s in being sent home on a cpap machine which she’s on 24/7 because off skin in the back off her throat will close over and block the end off Tracheostomy and it also stops are having desets in oxygen levels.
She has managed to get herself up to taking 45 minutes brake off her CPAP and using what they call a Swedish nose to cover the end of the tracheostomy. But after 45 minutes she dose be so tired because she’s working so hard so she goes straight back onto her.
There is so much more equipment she needs that we just don’t have the space to put it.
Never in a million years did I think I would be on the receiving end off home care packages and hospitals every dad but here I am and Ella’s my world and we’re looking for help to her a suitable home for all her needs as she requires wide set doors extra plugs for machines. There is an extensive amount off procedures that have to be in place before she can come home.
Ella will be nearly 1 when she gets discharged from hospital and I just want to make her life as good as she deserves for everything she’s been threw and for the road that lies ahead off us . I really appreciate everyone’s donated so far your all such lovely people thank you so much.