Zaidi

Hi, I'm Tammi, Mama to the most precious baby girl - Zaidi (Zay-dee). My husband is Patrick and we have 3 amazing children together and one angel, Layla.

I am writing this at 35 weeks pregnant, after a very challenging pregnancy and a whole heap of complications for Zaidi. We have fought SO hard since finding out at our 20 weeks scan that Zaidi had a diaphragmatic hernia, heart defect and cleft palate and lip. We have fought for the best care, even flying to Sydney covering up my belly because I shouldn't have been flying so late in the game (I've had 4 preemies!). We have fought all the way and wish we knew before, what we know now...perhaps then we wouldn't be sitting here with our hearts battling our heads :(

We came to Westmead to try and give Zaidi better chances and in the process, Patrick, the kids and I are camping in our camper trailer as we navigate all of this and await a spot in Ronald McDonald House if one comes up.

Since coming here, we have learnt that Zaidi has a major chromosomal abnormality - two infact. She has a large 'unbalanced translocation' of her genes and this has caused all of her issues and would take her life down a path of endless health, development and intellectual problems. Ones that would make life painful and filled with surgeries and hospitals.

Zaidi's challenges mean that she would need a minimum of 4 surgeries in her first year of life, she has a prognosis of 20% chance of survival alone just on the first surgery, she will likely have a life of surgeries, pain, seizures, learning, development and intellectual disabilities and this is all IF she even survives the first surgery. To even get to the first surgery would mean ventilator at birth, sedation and to be paralysed in the *hope* that her lungs and heart can sustain her to get surgery. Her particular gene issue also causes heart malformations and they can't get a good look at the whole picture yet.

Diaphragmatic Hernia alone, means that her stomach organs and liver are up in her chest so her lungs have not had space to grow properly. So IF we opted for "all in" treatment, her first experience of life will be a harsh one.

So we have done what we never thought we'd do....we have opted for palliative care at birth and we will spend the few moment Zaidi will have with her as a family. It's a harsh and awful reality to face and I woudn't wish it upon my worst enemy. But as parents, we owe her the strength to do what's right for her and given the 80% of making her life ONLY life support, pain and being alone, the right decision for us, is by no means the easy one.

We have also decided that for our children, we want to spend the recovery time from my cesarean, in Sydney so that we can re-start life with a mindset that we can progress with. After that, we will return to Kempsey and try our best to move forward with another angel in our life.

We are an ordinary family...this was no way in our budget!

Cremation alone is $4,000 and as well as the normal rent, food, bills, etc, we also have our Sydney accommodation costs to factor in. We are one week in and already overwhelmed!

My Mum has been amazingly helpful but we know this is bigger than any of us...nobody is prepared for this in any way, shape and form!!

Any assistance to move through this horrendous journey is very much appreciated and donations can be made directly to my personal bank if you would prefer to avoid fees.

Once we schedule the cesarean, we have an amazing team to help us navigate this as a family, to give Zaidi a life of love...even if that life is unfairly short.

As a family who have spent more than a decade running an orphanage for 'unwanted' babies in Kenya, then a school, we know all too well how precious a child's life is and we don't want anyone to think that we have given up on our girl. We are truly and honestly just trying to do what we feel is best for this beautiful baby and try to give her anything and everything we can in the heart breakingly short time we will have with her.

We appreciate the love and support of our family and friends, as well as the amazing team here at Westmead who are amazing in their own right!

"Zaidi" means "more" in Swahili....our girl has had more than her fair share, more mountains to climb, more stamina to climb them, more fight than most and ultimately....we love her more than we ever thought possible <3

For those wishing to donate directly to a bank account, here are my personal bank account details:

Tammisan Fenwick - National Australia Bank

BSB: 083-832 Acc: 871724565