Anneka and Aria’s story

January 13, 2020

Anneka’s daughter Aria was born with Pierre Robin Syndrome. Now that Aria is two years old, Anneka reflects on their journey and has a strong message for other parents: ‘please know it gets better’.

 

Aria as a baby and Aria now

I am a mum to 2 year old Aria who has a very rare syndrome called Pierre Robin Syndrome.

This is where a baby is born with a cleft palate and an underdeveloped jaw meaning the tongue would fall to the back of the throat causing obstruction of the airway.

When Aria was born we had no clue what was happening. She was immediately taken from me and needed to be resuscitated. At this moment all that was running through my mind was fear and the thought I may lose her!

She was rushed to another hospital an hour away from where we lived. The first time I saw her she was ventilated. I have never felt so broken and helpless. This is where we got the diagnosis.

I remember how I would get excited about doing her ‘cares’. This is something that should be normal to a new mum but to a special care baby it’s something you look forward to. I would change her nappy, assist with tube feeding and cleaning. This was so special for us to do.

I remember how I would get excited about doing her ‘cares’. This is something that should be normal to a new mum but to a special care baby it’s something you look forward to. I would change her nappy, assist with tube feeding and cleaning. This was so special for us to do.

Over the next few weeks Aria went from strength to strength (including pulling her own ventilator out and showing them she could breathe by herself). She slowly started needing less and less oxygen and eventually was tube fed with an airway to keep her tongue forward to enable her to breathe.

With the help of CLAPA we were also able to offer Aria milk via bottle. A cleft palate stops babies from being able to get the suck they need to feed. This meant I could not breastfeed. So with using the specialist Dr Browns bottles that were provided by CLAPA, Aria could actually taste her milk and slowly learn to take milk by herself.

After leaving the hospital Aria learnt to breathe by herself with no assistance by the time she was 4 months old and was feeding tube free by the time she was 6 months old.

She had a successful palate repair at 11 months and we have never looked back since.

Only 50 babies each year are born with Pierre Robin Sequence in the UK and I always say to my daughter that she is one in a million. She is strong and nothing will defeat her!

Only 50 babies each year are born with Pierre Robin Sequence in the UK and I always say to my daughter that she is one in a million. She is strong and nothing will defeat her!

As parents it’s so hard watching your baby go through this! Having grown this perfect human for 9 months to then have them taken from you at birth is terrifying. Over the journey I felt helpless, broken and even guilty. You find ways to blame yourself but I have slowly come to the realisation that nothing that I did caused this. I never envisioned having to put tubes into my child. You always imagine a ‘healthy baby’ but you will always come out the other side. Aria got me through it and looking at her today I am so immensely proud of her!

I wanted to share my story because at the beginning I was lost, fearing the future, scared and every other emotion. But please know it gets BETTER.  

 

Thank you so much to Anneka for sharing her story. If you’d like to share yours, click here to get in touch.

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