Positive about Down syndrome

Positive about Down syndrome provides information and support to new and expectant parents of a little one with Down syndrome.

We have amazing online support for our families, we know how important it is for them to have access to accurate contemporary information and so provide our book #NobodyToldMe the truth about Down syndrome to families and literature to maternity units.

We have recently introduced online early development groups for our preschoolers, baby Makaton signing courses for new parents and Makaton training for members’ nurseries/childminders.

We believe every parent should receive the best possible care and support.

We believe the arrival of every baby with Down syndrome should be celebrated.

We believe every child with Down syndrome should be given every opportunity to flourish and thrive.

  /  Into Childhood   /  Neil


Shilpa is a pediatrician and the mother of a 6-year-old son, Neil, who has Down syndrome. She has kindly allowed us to share her story – which also features in The Mighty.

We are always happy for our stories to be shared.

I was working the day he was born. It was a day like any other day.


I took the morning rounds checking my patients. By 4 p.m. I started contracting but my shift was supposed to end at 5 p.m. My husband was working in the same hospital as pediatric intensivist, so I informed him I was in labor and we went to the labor and delivery ward next door. The obstetrician checked the CTG, which is a tracing of the baby’s heart rate with the contractions. It was abnormal, so I was instantly taken for surgery and within the next half an hour we were blessed with a beautiful boy.

Lying on the operation table, I took a sigh of relief as I heard his first cry. When I was in the recovery room, my hubby came to me and bursted in tears, saying our boy had features consistent with Down syndrome. I still remember my reaction, “Hemant, it’s OK, we were chosen for this.”


The next two months was the period of so called “bad news.” One of the best hospitals in Mumbai, one of the best pediatricians of Mumbai, told us he was sorry. He said Neil’s blood test was positive for Down syndrome, he might not be able to do certain things, he would require a heart scan, eye tests, hearing tests, physiotherapy, speech and language input and on and on. I don’t remember anyone saying to me, “Congratulations!”

Now, years later, Neil is in mainstream school. I must mention, he is favorite amongst his friends. He is very popular with his teachers. Everyone, including the gate man, gets a smiley “Good morning,” no matter how he started off his day. His smile is so contagious that even when you are crying, you can melt down with a smile after his tight hug. No matter what the world thinks of Down syndrome, we feel blessed to have him in our lives. He is an ideal big brother, helping his little sister wear her shoes and even encouraging her with potty training!

His bedroom wall is full of certificates, ranging from reading, maths, science and even core values.

I have now been working as a pediatrician in the UK for the last five years. When I deliver babies with Down syndrome, I make sure the first thing I say to all new parents is, “Congratulations !”
I felt lost those first few months when my baby was born; I did not enjoy his tiny toes, his tiny grip that said without words, “stay with me.” I want something different for these new parents.
Now in my hospital when I meet a new parent of a baby with Down syndrome, along with the information leaflet, we give them a poem that says, “It’s gonna be OK. The pain will lessen and the courage will be passed on. Don’t waste time worrying, enjoy your little one.”

Shilpa recommends PADS to her new parents and we are working with her to distribute PADS to new & expectant parents at her hospital in central London.