Ava's Story

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Niamh's Journey

  Ava Sarah Ryan was born on 27th January 2009 after a full term pregnancy and normal
  delivery. She weighed 7 lbs 8 oz and cried on arrival. The only complication during pregnancy was gestational diabetes which was controlled by diet.

Ava had feeding difficulties from birth. She was admitted to hospital in Galway, Ireland when she was 2 weeks old due to failure to thrive. Ava slept a lot and often had to be woken to feed. She was a very placid baby and rarely cried. A speech therapy assessment determined that Ava had poor suck swallow coordination – a dysfunctional suck. It was noted that Ava had a high arch palate. She was fed via a Nasal Gastric tube for 2 – 3 weeks and began to gain weight. Her feed was changed to Infatrini – a high calorie milk. Speech therapy also recommended the use of the Haberman bottle (designed for children with special needs.) This worked very well for Ava and her feeding improved.

She had some reflux which caused her a lot of discomfort and this was accompanied by periods of intense crying. She was put on Infant Gaviscon which helped.

Ava
Ava 2

  Ava had her first seizure when she was 6 weeks old. During this seizure Ava raised her arms, her body stiffened
  and her eyes flickered, deviating to the side. Ava was readmitted to hospital. Initially doctors felt the seizures
  were febrile as it was found that she had a urinary tract infection. However, even when the infection cleared Ava’s seizures continued. At this stage she was having 1 – 2 seizures per day, although some days were seizure free. She had a cranial ultrasound, an MRI scan and EEG which were normal. All blood work, chromosomal testing and a lumbar puncture came back normal.

Ava was commenced on phenobarbitone in March 2009 and transferred to Temple Street Hospital, Dublin for further investigations. She was now under the care of Professor Mary King, consultant paediatric neurologist.

Prof King’s initial concerns were around Ava’s head circumference which had not grown at the rate it should have since her birth. Ava was diagnosed with post natal microcephaly. A second EEG was normal. Ava underwent extensive genetic and metabolic testing. All results were normal. Ava’s seizures continued when she went home, although she did have a period of 2 weeks without seizures.

Ava was now on phenobarbitone and clonazepam. Her seizures remained drug resistant. She was readmitted to hospital in Galway when she started to develop apnea during her seizures. She was in hospital for one month. During this time Ava developed the chicken pox, bronchilitis and pneumonia. Ava was started on carbamazepine.

  In July 2009 she was again transferred to Dublin for further testing. More genetic and metabolic testing was carried out.
  Ava was taken off phenobarbitone and was commenced on theketogenic diet.

She was on the diet for approximately one month with no success. Her seizures continued, anywhere between 5 and 15 per day. Further EEG’s were abnormal but showed no specific pattern.

Ava’s drug combination was changed again – phenytoin was added, followed by Epilim, Topamax and Keppra. Her seizures remained but became less severe and she no longer stopped breathing during seizures.

Ava 6

  Princess Ava was and always will be adored and cherished by her mommy Angeline, her daddy Bryan and her big
  brother Calum. She has grandparents, aunties, uncles and cousins who loved her dearly and miss her so much.
  Ava was and still is a little angel. She had an amazing spirit; she was so brave and full of love.

Ava’s mommy and daddy loved her more than she will ever know. It is amazing how a little girl who had never uttered a word
made so many people fall in love with her…

Ava had big, beautiful dark green eyes and she had the longest eyelashes ever (everyone thought that mom curled them but
she really didn’t!) Miss Ava loved kisses and cuddles and loved mommy running her fingers through her hair. She was the
spitting image of her daddy and definitely “daddy’s girl” (And mommy’s too!) Ava was the most special girl in Temple Street
Hospital and was an obvious favourite of all the nurses (Shhh, don’t tell the other babies!) She was the “Posh Spice” of Temple
Street and was so on trend fashion wise (thanks to the Bank of Dad, and her personal stylist…Mom!)

Ava 8
Ava 4

  On the 16th of October 2009 Ava's nurses and doctors became concerned. They couldn't bring her temperature down and
  her breathing was becoming shallow and laboured.

Her heart had started pumping very fast but inefficiently and she was on full oxygen. They were losing Ava. Her mom cradled her and
told her over and over how much she loved her, and Ava passed away peacefully in her arms.

Ava taught everyone who met her so much about life, love and strength in her few short months. She will be loved and missed forever.

  Ava’s mommy and daddy would like to express their heartfelt thanks and appreciation to Professor Mary King and the nurses and doctors of St. Patrick’s
  Ward, Temple Street Children’s Hospital. The nurses who looked after Ava are so amazing and cared for her so wonderfully. She definitely won a place in
  all their hearts and she loved all her “aunties” very much!

They have been so supportive to Ava’s mommy and have wiped away many, many tears. It was always so reassuring knowing that our little girl was in such good hands.

Ava's mommy and daddy would also like to thank Dr. Mary Herzig and the nurses and doctor's in St. Bernadette's ward, University Hospital Galway for the love and care they gave to Ava.

She was so small,
So beautiful,
So full of hope and promise.
What a blessing she has been to all of us who knew her those few short months.
She taught us to love,
To hope beyond expectation,
To trust in that which is unseen.
She drew us together
In our anxiety,
Our moments of despairing and hopelessness,
As well as in our joys and delight, and in her every breath.
Her life ended prematurely
Too soon she died.
We wept.
The tears continue.
We hugged and held one another.
The pain will always linger.
Our hearts emptier for her absence
And the unfulfilled dreams she promised.
But the love she brought
Into our lives will live forever.
Thank you for giving her to us.
Thank you for the blessing
That she will always be.
Thank you for the love we would never have known,
But for her and her brief days with us.
Thank you for our blessed, beautiful and brave child of grace, Ava.

"Most people only dream of angels - We held one in our arms."

Ava’s mommy Angeline can be contacted on angelineryan@gmail.com