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“Niva” Give Up Hope

“Huh!?”

“The reason we have called you back is because your baby’s heart………The simple term is TGA. Prepare yourself, it’s going to be a long few weeks.”

My old Grandfather always told us ‘Health is Wealth”. All of us grandkids nodded in agreement but the depth of those words has only recently begun to sink in. I was quickly referred to Obstetrician at Westmead Hospital. After rescanning a very stubborn bub that wouldn’t turn and confirming my baby’s heart anomaly she took us under her wing. I felt a huge sigh of relief that I was wanted. I was safe again.

Scans and appointments by all the appropriate, highly knowledgeable professionals have made our journey supportable.

When Obstetrician came along to our cardiology scan, I felt as though my mother was holding my hand on the first day at school while I was trembling inside and unsure where to go or what to expect. She listened to Cardiologist findings; he explained what he could see in the scans and all the while was careful not to give us false hope. This realistic outlook helped keep our heads out of the clouds. To hope will always be at the forefront of our hearts and minds however, is not a luxury we can always indulge.

Will my baby survive? Will it be alright? What is ‘Alright’? Why is this happening? Chetan and I are healthy, so is our first born so how could our unborn child possibly have heart disease!? We think about our families, extended families … not one person has this type of illness. So, how did we manage to conjure up a heart baby?? We opted to have an amniocentesis and check out the DNA. I was petrified not only of the procedure but of needles too. I lay shaking on the chair, tears rolling down my face, emotions running riot as they prepped me. I see the needle, I can’t look away… “Don’t Move...............................................”

And before I knew it, it was over and I can honestly say, I didn’t feel a thing! (Aside from feeling like a big baby!) I took advantage for the remainder of the day and told Chetan I had to lie down. The amnio. results showed the heart anomaly had nothing to do with our genetics also, no indication that it would have other disabilities. Following this, we had some important decisions to make.

The hardest decisions were knocking on our door and a little bub was busy kicking inside. We decided to continue with our pregnancy. When I found myself doubting my decision, bubs would kick as if to let me know it was all going to be ok. From that decision onwards we decided we would Never Give Up Hope on bubs. We would love it like the doting parents we always imagined we would be.

Do you remember your Mum introducing you to someone so you could be friends? When obstetrician introduced me to midwife, I had no idea how significant she would be. How a stranger would take on a patient, guide her, support her, laugh with her and become a trusted friend. Someone who watched over our 2 yrs old while I was busy giving samples.

I remember wondering if my midwife had other patients. I felt as though I was the only one. I knew that really she did, I had seen her very big, filled file but I always felt like I was the only one. Our appointments were very calm, never rushed and always informative. My midwife has a contagious smile and gentle demeanour which made the whole “baby with a heart defect’ a little…’light hearted’. Haha

1st March 2016, 9.22pm our beautiful Niva was born. I was fortunate enough to have a minute of skin time with my daughter. I can barely remember it. She was whisked off to the Children’s hospital and the next time I saw her was at 2.30am. I wasn’t sure what to expect. How she would be coping. When I arrived at ICU Niva was well cared for. She had some wires and tubes on her - not the way one would ordinarily hope to see their newborn but, it could be worse. Nurses in the ICU and High Dependency unit can only be described as adoptive mothers. They have comforted Niva, changed her first nappies, and fed her… all the things I longed to do. I can’t thank them enough.

“I lay alone in my bed, thoughts of Niva in my head. The sound of someone’s baby crying and my poor Niva was just trying.”

Late one night in the maternity ward I heard a baby crying non-stop. I’m certain the mother wished her baby would stop. How lucky to hear your baby’s cries. Earlier Niva had a Balloon Septostimy and was ventilated. The tube through her throat meant that even though I could see her face wanting to cry, not a sound came out. How fortunate are the mothers who can hear their children cry.

The next 10 days were long and tiring. Leaving my eldest behind in the mornings and returning when she was fast asleep. Luckily her loving grandmother flew in from London to look after her and us.

On day 8 we received great news, Niva could come home!! Day by day her wires had been removed, monitoring reduced and feeding was established. After an overnight stay at the hospital with Niva in the room the nurses made sure we were 100% confident to take Niva home – we couldn’t wait! Follow up appointments we made for us, important contact information was given and then off we went returning only for weekly monitoring.

Niva is currently 8 weeks old and due to have her first heart surgery soon. I am confident that the appropriate medical decisions are being made in Niva’s best interests. We whole heartedly believe that at Westmead , we are in the best place for Niva. Words simply cannot do justice for the support we have received so far. We are confident that this will continue.

 

A little tip for anyone else enduring a similar situation: ‘Never Give Up Hope’