I came across the wonderful Porter family on Twitter a couple of weeks before their second daughter Kara was born. Kara has Down syndrome and her parents were prepared for this before she arrived in their world. I was immediately struck by the calm excitement, love and pride that already emanated from her parents before her arrival. I thought back to our shaky beginnings with Natty in our lives, a sharp contrast to their experience and I felt nothing but admiration and respect for these wonderful new parents. They had felt and overcome their shock and grief antenatally and were ready to welcome this beautiful daughter with open arms, one of the 6% of babies with Down syndrome who are not terminated or miscarried during pregnancy.
I waited anxiously for new tweets after the news that labour had begun, I held them in my thoughts, conscious of the flagged heart and digestive problems. I was overjoyed to see the first new pictures of the beautiful and perfect little bundle when she made her debut appearance. Many of you joined in sending your congratulations. Kara is doing brilliantly, feeding and home safe and sound where she is getting to know her older sister Eloise. I am delighted that Craig and Sara have kindly agreed to write and share their story with Downs Side Up readers, despite that early baby haze of exhaustion that we all find ourselves in.
"I am currently covered in bits of food, trying to organise my living room despite toys, books and a changing mat. I am tired after broken sleep and cluster feeding a new born baby. This is the typical scene any parent can recognise - those first few weeks always seem to last forever. Kara is sleeping in her moses basket and Eloise my eldest is settling down to bed. We should not be here - it should not be like this.
Kara is a baby with Downs - one of the 750 children born each year and one of the very few that are not terminated from the result from the Nuchal scan at thirteen weeks. We also had an amniocentesis.
There is a passage in Wolf Hall from which describes how Cromwell feels when the ceiling crashes in - that is the nearest reaction I can give when you hear the results. I remember the shock, the question - Why? I was 37 but not that old, I did not smoke and was fairly healthy. What did this mean ? How could I have a disabled child ? What about my eldest child ? What about my life? The fetal medicine team were amazing - they explained all my options. I could not think - it was like a cloud of grief. We elected to have scans - and to research this to the nth degree.
I called people who had children who had T21 , scoured the internet trying to assess what this meant. I asked advice of friends, relatives, experts. The Downs Syndrome Association hand out huge packs of information at the hospital. I read, examined and weighed up all the options. A couple of things made me think - my Granny just turned round and said " The child will never lack friends" and a very close friend stated it very clearly "Its going to look a bit different and it will learn at a slower pace". I just felt that this child had a right to life and from the scans it looked like a baby.
Its not been plain sailing - heart defects were detected and so were digestive issues. We were prepared to have child in neonatal with tubes sticking out at all angles. But it was not like that. The birth was quick and normal - (it hurts). Straight away Kara breast fed. She sleeps well and hates to be cold. She cries less than other babies so you have to read her but she is feeding so well. Her heart defects had healed, there was no digestive problems and she is hearing like any normal baby. So as I explained at the beginning we really should not be here and I am going to grab five minutes to have a lovely long bath."
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Congratulations on the birth of your gorgeous daughter and thanx for sharing with us Hayley. I am new mum to a 3 month old daughter with Down's syndrome called Elodie. We too knew anti Natally and our story is very similar to this also having an older daughter. It is nice to hear of kindred spirits and know we are not alone. Lots of love to the porter family xReplyDelete
Congratulations to you too Claire and welcome to the world beautiful Elodie. You are never alone dear friends. H xDelete
Congratulations on your new baby girl porter family and thanks for sharing Hayley. I am a mum to a 3 month old daughter, Elodie, who has Down's syndrome and our story is very similar to the Porters, we have an older daughter as well. We knew through anti natal screening, but felt our baby needed a chance to come join us. Nice to read stories similar to ours, makes us feel less alone! Welcome to the world baby Kara xReplyDelete
Thanx Hayley, love your blog, really is a fantastic help to us new parents :)ReplyDelete
My daughter had baby boy with DS at 34, no clue of this with all testing done Didn't smoke, d rink ate the right foods and of course it was a shock. He had open heart surgery at 5 months at Riley hosp. and is doing great. He is in pre-school and holding his own, very smart and in public school system. Jordan has changed our lives as he is a happy outgoing little boy and full of love and smiles. These children are special and the world is missing knowing how loving and special they are. Of course he has Grandma wrapped around her little finger and God has blessed us with Jordan. God Bless the parents with DS children as God makes no mistakes by chosing you.ReplyDelete