Shamila gives mummies around a world a big dose of inspiration as she shares her life journey with us.
Her baby girl was born with Heterotaxy Syndrome (HS), with: half a functioning heart and a midline liver instead of on the right like other children. Baby Ariana is also missing a spleen and her stomach is on the right side instead of on the left.
Heterotaxy Syndrome is a rare birth defect that involves the heart and other organs. ‘Hetero’ means different and ‘taxy’ means arrangement = different arrangement.
“I couldn’t accept that nothing can be done for my baby. I was completely devastated.
It felt like my whole world came crashing down at that point. I just needed to find answers to make it right for my baby. I HAD TO.”
How and when did you find out about it?
In many cases, HS is diagnosed prenatally. Where expecting moms will be better prepared and the hospital can monitor baby and mother throughout the pregnancy and create a plan for labor and care after the birth.
However in our case, Ariana was diagnosed when she was four days old. On day two, Ariana’s pediatrician felt that there was something wrong due to a heart murmur.
On day three, Ariana’s pediatrician requested for a test to be carried out after discovering some heart anomalies–two big holes. Institute Jantung Negara (IJN) confirmed Ariana has Heterotaxy Syndrome – Right Atrial Isomerism with severe mutiple heart defects. A second opinion at Gleneagles hospital just sealed our biggest dread.
What was your first thought when you understood her condition?
I had a tough time understanding it all. It sounded Greek to me. But Ariana’s pediatric cardiologist made it very clear that they can’t repair her “broken heart”.
I cried so much that day, but I stopped when I looked at my daughter. In the process of searching for answers on what to do, I had an epiphany. I need to make sure she has a good and full life. No matter how “long” it may be.
That is how I named my daughter — Shakirah Ariana which means “thankful/grateful” and “full of life”. It was also then I knew my daughter will be spoiled and that’s ok. 🙂
What were the steps taken to ensure she’s healthy?
I needed to understand what Ariana’s condition is in order to provide her with the best care. I read many, many articles to try to make senses of Ariana’s condition. I even read horrific statistics indicating the survival rate for children with HS were very low; 80% of these babies will not make to even a year old. 🙁
What was the doctor’s prognosis?
Also, it is unfortunate that Malaysian medical practitioners don’t provide sufficient info for the parents to provide best care for babies with severe heart conditions.
In fact both IJN and Gleneagles doctors have discouraged me to obtain medical care for Ariana and have tried to persuade me to bring my daughter home and “allow nature to take its course”. Their ‘reasoning’ for me to give up on my baby was:
a) There’s not much you can do when babies have Heterotaxy Syndrome
b) It’s emotionally and financially draining
c) It would be too much stress on your marriage
d) Ariana will not have quality of life
e) It will be much easier to just let go
I refused to accept these reasons as they were not important compared to making sure that my daughter is happy and as healthy as can be.
How do you keep yourself strong and positive?
It is faith, hope and love for my daughter that keeps me positive. I also make an extra effort to be happy around my daughter. I will never ever be near her if I am emotional or crying.
I have a rule– If I had to cry, it will only be for five minutes. Then I’ll wipe off my tears and put on a smile. Only then will I carry or hold my daughter. I only wanted positive energy around her.
It has been a truly emotional roller coaster ride for us. That said, the joy and happiness I get when Ariana turns and smiles at me or laughs…each and every moment with her is truly special and precious. I never take a single second with her for granted. And I know how much I am truly blessed to have her with me.
Where do you get support?
Having great family and friends’ support has been really helpful as well.
Also there is a support group called Heterotaxy Network on Facebook. It was set up by a mom who has a son with a similar condition as Ariana. These moms and dads have been very supportive. I have learnt so much more about Heterotaxy from them than from Ariana’s doctors.
How is Baby Ari now, are there any upcoming procedures?
Shakirah Ariana is always happy and active. You wouldn’t have guessed she has a severe medical condition. That said, in actual fact, Ariana’s heart is beginning to fail again. She will require several open heart surgeries for her heart to cope as she grows.
We are scheduled to fly off to Boston Children’s Hospital, MA end of this month. She is expected to undergo Glenn surgery as well as to get her leaky valve repaired. She is also expected to have a Fontan surgery done when is she turns 3-5 years old.
What’s the best thing about being a mother?
For me, it was the first time I heard my baby crying. It was the most beautiful heart-felt feeling that reaches all the way to your soul and it takes your breath away.
I never knew what “LOVE” really was…till then. Life is no longer about me; life is about my child. It’s her health, happiness, heart, soul, and spirit that matters the most now.
What’s your message to other mothers facing a medical ordeal?
Hold on to your faith even more now. Have hope, and love will pull you through anything really. Also, do seek support group out there where parents are going thru similar situations. They are the ones who can truly understand what you are going through and are able to provide the kind of support you need.
If something does not work for you—you need to let it go. Do not dwell on things that you have no control over. Just stick to what works for you and your baby.
Who do you look to for inspiration?
Shakirah Ariana is definitely my inspiration and my hero. She has been a real trooper from day one, enduring more in her first year of life than most of us will ever have to suffer in a lifetime. My baby only has half a heart but she is so brave and beautiful–I am ever so proud of her.
When she was barely two-months old, she was struggling to breathe. She “coded” for more than 10 mins. Then she was revived, intubated and had an open heart surgery. That’s not all, she had countless echocardiograms, EKGs, needle pricks (for blood draws and shots), heart medications, feeding tubes, and numerous cardiologist visits AND she is alive and doing fantastic!
Click here to watch baby Ariana’s untold story
With all my heart, I wish there will be no more emergency trips to hospitals and no more surgeries. I wish she didn’t have to suffer anymore.
I wondered what her quality of life would be compared to other kids… But God has chosen Shakirah Ariana. And God has chosen me as her mom. And I know in my heart there is a reason for everything and that Allah knows best. Perhaps half of a heart is all my daughter will need. Mama love you SO much sayang! ♥
What is your Mother’s Day wish?
I have known many great mothers (Alexandra Raper, Anne Penix, Tessa Mouw, Nad Wan, Kristine Brite McCormick) and many other unknown mothers who have lost their babies to Heterotaxy and to other illnesses.
The truth of the matter is, all of you here are mothers. Just because your children are not with you does not make you any less of a mother or not a mother at all. You all have been great mothers to your babies … regardless if is just for few days, months, years. And I am certain your baby knew how much you loved and cared for them.
I wanted to take the time to wish all of you all a special Mother’s Day. Know that your children are looking down upon you with smiles from Heaven. ♥
