Challenges - how we coped...............

as time was to be short we decided it important to have a family Christening and Blessing while still in hospital.

I would like to be available to answer any queries in relation to our experience of caring for our daughter born with Trisomy 18 / Edwards Syndrome.

I am happy to share how we dealt with the unexpected as we certainly were travelling blind!  While in the neo natal ward / in hospital - We were not told of any support groups or of any survivors!

There was no information to support us at the beginning.  As many other families we were told we were unlikely to get to take Melissa home and we were told she would not make her first birthday! For that reason we decided to celebrate a birthday each month.

My first choice was always to breast feed.  Not to be though!  Melissa did not have the strength to suck from the breast (and her mouth was too small!) so instead I expressed my milk and she was fed with a special bottle provided by the hospital.  This worked - very slow and quite exhausting for our wee girl.

Were we aware there was a problem prior to the birth? No we had no idea!  the birth was by caesarian as there were concerns for baby arising. When born, Melissa was 5lb 3 1/2 ozs and she was placed in a warmed cradle - no other intervention was given.  Her disability was only discussed when a nurse in neo nates saw her and recognised traits similar to Trisomy 18. This was discussed this with the Paediatric staff.  Tests were then requested and done.  Trisomy 18 result received prior to us leaving to go home with our wee girl.

All I wanted was to get our wee girl home.  We really had no questions - we were given no hope.  The minute I could feed her enough we took her home.  A very different home coming and it was not until we were there did we realise what  a task we had ahead of us.  All  I had was a piece of paper with instructions from the hospital. 

Concerns to watch for: Blue lips - poor breathing  - gasps - cold skin - poor weight gain.

Another challenge we encountered was at 4 months old when Melissa was snuffly - with a cold perhaps? I rang our family Doctor who said he would do a home visit as he did not want to expose Melissa to any germs at his surgery. Melissa's hold on life was so fragile that everyone who met her wanted to give her the best chance. The prescribed nose drops did not work in that she immediately vomited and the medicine he prescribed did not stay down either - later we realised any food with orange colouring was a no no!  Also our biggest risk was of aspiration pneumonia! So we just took our chances and loved every minute with her. 

I am very thankful to our family Doctor who did all he could for our wee girl.




06.06.2013 23:26

Josie Murrell

Hoping the sharing of our experience will assist others.....