Living with down syndrome: Little Kayleigh has a hard journey

Kayleigh, who turns 1 next weekend and has down syndrome.
Kayleigh, who turns 1 next weekend and has down syndrome. Contributed

THIS is Kayleigh's journey we will share our experience.

Kayleigh was diagnosed with Down syndrome. We found out when she was a week old.
The day I had Kayleigh I was told she has to have a ECG before leaving to go home. I freaked, not knowing what an ECG was. I then found out that one of my previous ultrasounds came back with an issue with heart but that I was not informed.

The ECG came back fine and was able to leave. We had our midwife come out for the next few days and on third day when we where giving Kayleigh her first bath she turns to me and says do have any concerns on how your daughter looks?

I replied "no, I think she is amazing" she then left and the next day, for a last visit, called and asked if we could come to hospital. When we arrived, we walked in to the room to find the midwife and a paediatrician. Our midwife explained she had concerns for Kayleigh. I got nervous.

The doctor looked at my special little girl for a couple of minutes faces me and says "I 100% think your baby has down syndrome". I was shocked. I didn't think this could happen. I hadn't even thought about the possibility of having a special needs child.

I then had to go have blood test and a terrifying three days later, after a lot of Googling about down syndrome, we got a phone call confiming that our daughter was different. We were told it was uncommon to have a baby at my age with down syndrome.

The next couple of weeks were a little bit of a blur, getting use to the fact I had a "different" child. I was afraid to do a lot of things I did with my first child.

When my daughter was two months old I went for one of our regular check ups with our paediatrician. While there, he noticed a murmur in her chest so we were then immediately taken to hospital another ECG and X-ray and a ultrasound on her chest and the next day was fastracked to the Mater childrens hospital in Brisbane to see
a paediatric cardiologist and to have an ECHO - which is a special ultrasound all about the heart.

We where told our daughter had a duct still joined from her heart to a lung and a small hole in her heart - an ASD.
A month later we went back to Brisbane for a routine check to see if the duct or the hole had closed and we were told that our baby had to have a surgery to close the duct as her lungs were filling up with blood, explaining a lot of chest infections she was having .

So we travelled to Brisbane to have her surgery a week later they closed duct using a surgery called cardiac catheters, where they place thin tubes with a little camera in a vein or artery in her inner groin area and up to her heart where they where able to close the duct. Her surgery went an hour over what they told me and I was worried sick the whole time
found hard to do anything.

We were discharged next day so she could recover at home. I was scared to move her legs as there was a lot of bruising. We then had to the local paediatrician every month for the next four months and see her cardiologist every two months. She gets her hearing checked every six months and her eyes every year.

We have just seen our ENT speacialist and was told Kayleigh has to have her tonsils and adenoids taken out asap. We are a little worried as we were told, due to her pulmorary hypertension and other heart issues, it can be risky - so another surgery is planed for a little baby who turns one.

I still feel like I have a three-month-old. It's hard but really rewarding when she does something new.

She is also due to get her hole closed. In the meantime, it is a lot of waiting and appointments, physios and speech. It is very expensive and Centrelink refuses to recognise the fact she is a different child and won't allow carer payments, which is an extra little bit for appointments.

It hurts when people fail to recognise that there is a lot different.

I want to share my story to make people aware it can happen to anyone - but these children are absolutely amazing. It is down syndrome awareness month.

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