Where the journey began

By November 26, 2019 December 22nd, 2019 About Us, Charities

Thank you HeartKids Australia for posting our story on your website. This means a lot to us and we look forward to continually working together to help raise awareness and money for you guys. If you wish to see the post on HeartKids Australia website please GO HERE.

It was March 18th, 2017, our precious daughter was born into this world. Our last child of four other children, she was a miracle. Iylah was delivered naturally with no complications. Little did we know in just a short week we would start seeing our precious newborn baby suffer heart complications.

After Iylah’s birth the doctors or more precisely a junior doctor did our post birth check for Iylah’s vitals, he run a blood saturation test and had picked up that she had low blood saturation’s. They also couldn’t feel the pulses within her groin and feet. Iylah’s pulses were so weak due to her heart not pumping enough blood the doctor had to use the Doppler to be able hear the blood flow.

The doctor had mentioned to us he was concerned however not to worry just yet as he will get one of the head cardiologists to come down and double check. This lady gave us the impression that she didn’t want to be undermined or proven wrong by a junior doctor and had cleared us after running the tests again even though her saturation’s were shown to be low on a second test. She sent us home with the information that our daughter had a soft systolic heart murmur and to check in with our regular GP.

We assumed the doctors knew what they were doing we discharged and went on our way home. 7 days post birth on the 25th of march we had an appointment with our local GP to do another post birth check-up and to check Iylah’s heart murmur. The doctor reassured us she looks healthy however she can still hear a heart murmur and to come back in two days for another check-up.

That night my wife woke me up and expressed concern our daughter was struggling to breath. Iylah’s breathing was fast and was sitting at approximately 150-160 breaths per minute. This lasted about 5 minutes and went away completely. This incident sparked us to do some research. The next day I watched some videos on YouTube about babies struggling to breath and what it looked like to compare to our daughter’s episode.

On the 27th of march we went back in for another check up with our GP to see how Iylah’s heart was going. The same GP expressed her concern Iylah still had a heart murmur. The doctor left the room and came back in with two other general doctors who also looked Iylah over, they expressed they were not so concerned however they did up a referral back to the hospital and we should receive a call for an appointment with one of their cardiologists.

Come about 5pm our daughter showed some concerning symptoms Iylah was having fast breathing patterns again, so we called doctor to your door. While we were waiting, I got my wife to hold our daughter and let me undress her partially to see if she was doing what I had watched in the video. I was shocked. She was, I immediately told my wife to call the ambulance and I cancelled doctor to your door, we were anxiously waiting for the ambulance and packing our bags to go to the hospital for the night.

When the ambulance arrived, they did some visual checks and insisted to us that she didn’t show any concerning signs and they were not inclined to take her up to the hospital. We were hesitant with the response and we had pushed for paramedics to take Iylah up to the hospital. My wife jumped in the back of the ambulance and I waited at home with the 3 other kids. When my wife arrived at the hospital, they did the initial checks in ED and they all seemed to say she was ok, and they didn’t really seem to have any concern with Iylah’s health. A few head doctors agreed to do a blood pressure check on all four limbs at the same time.

The doctors and nurses then admitted Iylah to hospital and told my wife Iylah’s blood pressure is very high we are going to call in our paediatrician cardiologist for some more tests. Ben the cardiologist introduced himself and got straight into doing a heart ultrasound this is where our whole world came crashing down, he told my wife Iylah has a heart problem and it is serious, my wife then called me and informed me about the news. I arranged for my mother to come watch the kids and I rushed up to the hospital.

When I got to the hospital my wife was in tears and in shock, the head cardiologist called in on emergency dressed in thongs, cargo pants and a button up tee ready to save a child’s life. We hugged and I took over as our family’s rock. My wife left the room after they did the scan on our daughter’s heart to confirm Iylah’s condition as it was about to get very hard. My wife left the room as she could not stand to see our precious newborn undergo everything she was about to endure, Iylah had to get a drip into her veins and quick.

It was literally a life or death situation at this point and time. She had stopped receiving oxygenated blood from the bottom of her chest to the rest of her body, the backlog of blood in her heart meant Iylah was about to have a heart attack. She had an inflamed liver due to no oxygen and an enlarged heart due to blood not being able to flow properly. she was deteriorating quickly. It was the hardest point in our lives watching our daughter deteriorate and having to hold Iylah down and keep her still all while she was screaming kicking and crying as the doctors tried multiple times to try get a drip into her collapsing veins due to her condition to administer the drug prostin to save her life/stabilise her.

A few hours in we finally had our daughter stabilised we got to sit down and chat to the head cardiologist about what is happening. We learnt she had hyper-plastic arch and a severe coactation of the aorta, if we didn’t get her in when we did, she would have died before the next day if not sooner. Our gut instincts prevailed, we got our daughter over the line just. Even though Iylah was stabilised she was nowhere near out of the woods just yet. Between the night and morning flying to Brisbane from Cairns we had to re administer the drip multiple times because it kept failing, not being able to feed our hungry crying newborn daughter due to the complications with heart surgery and fasting for surgery was excruciating.

Our family were transferred from Cairns, due to the medical Equipment and exceptional medical care Brisbane children’s hospital provide for very sick children. My daughter was flown down using Life Flight

My wife finally arrived at Brisbane with our daughter and my wife’s mother was fortunate enough at the time to be at a work event down in Brisbane. That day I arrived in the evening and this is where we started getting more answers and finding out things that were fault of the head cardiologists lack of poor judgement at the very start. We had learnt that the moment they had to use a Doppler on her groin to hear her blood flow is where they should have done the blood pressure test on all four limbs however they didn’t. The blood saturation’s showing 2 different readings at two different times also called for investigation, but this was all put behind us as of right now we were focused on keeping our daughter alive.

We had been booked in for surgery but that was a problem. In the realm of the PICU ward at the children’s hospital our daughter’s condition was like a paper cut, there were unfortunately a lot of sick babies coming in which meant Iylah’s surgery kept being postponed. We however do understand in life there is always someone worse off or someone better off with their health we had complete trust in the surgeons and that Iylah was in good hands. The amount of trauma we were exposed to with other kids and families was sad. It has left a mark on our family’s hearts for good.

It had been about 4 days since original surgery day we were still waiting for her heart to be operated on Iylah had only been on IV drip nutrients to stay alive and drugs they were keeping the duct in her heart open. This is now 5-6 days without milk and a lot of sitting on edge. We needed a break. So, my wife, Mother In law and Myself went down to a local pub nearby and decided to have lunch. I remember specifically saying to my wife, “you must always look and feel your best for Iylah, because if she sees and feels you looking and feeling your best, she will sense everything is ok and she won’t worry” this was to keep that fighting spirit alive in Iylah. Even though deep down inside we were torn to pieces we didn’t want to show her our fears and we wanted Iylah to sense/feel that she will be ok in amongst all this chaos.

We had finished up our lunch and we were heading back, anxious as always as we never know what is around the corner. We had arrived back at PICU and tried to buzz in but we were not able to be let in… Strange, tried again and no luck. Another PICU family had arrived and was buzzed in, so we decided to go in as well. As we arrived to Iylah’s room what we saw was like we just got hit by a truck and our life flashed before our eyes as doctors tried to usher us out quickly. Our baby girl had given up and was being put on life support. I will never forget seeing the big blue drapes the blood from arterial lines and the amount of people frantically working quickly to get her on life support. About 2 hours later everything was stabilised she was on life-support and we were allowed back in to cuddle and love our motionless baby. The following day she was whisked off to surgery and surgery went extremely well. It’s hard to imagine they repaired a heart the size of a strawberry.

Our beautiful Iylah came to after her surgery and was alert and happy. Despite being sick, having arterial lines, the medicine drips, iv’s, a breathing machine, and on a tremendous number of drugs she was still able to crack a smile. We spent two weeks down in Brisbane supporting Iylah through her recovery and then we were able to bring our baby home.

When we arrived home, we had another run in with the doctors refusing to listen to us about an infection on her surgical wound which later ended up having to get her admitted into the hospital again and put on IV antibiotics, but 2 years on she’s going strong as if she had never had heart surgery. We still have to have regular check-ups as she still has hyper plastic arch and we need to make sure that her heart grows with her body and that the scar tissue from mending her aorta doesn’t restrict blood flow again.

Throughout this whole process, we had the biggest shock of our life and because of this I will never look at life the same again and especially McDonalds and other charities. Due to our traumatic event we had to lean on charities such as Ronald McDonald House and HeartKids. RMHC gave us Accommodation and Food for a whole week free of charge above the Hospital we were staying at. When our daughter got moved to the heart ward my wife and i got moved across the road were, we were given a comfortable room that was hotel quality with amenities and a massive communal cooking area to live comfortably for the next week. While we were dealing with our traumatic event in our down time HeartKids Australia had special meet up areas to talk and relax and be educated with a whole group of other people in your situation along with heart beads to hold and cherish for life.

From the bottom of our hearts we thank our whole family for stepping up and banding together from Cairns, Townsville through to the Sunshine Coast helping us with our kids while we were away with emotional support and everything else you all done for us. We also want to thank the charities Ronald McDonald House which is funded by McDonald’s and Donations and HeartKids for everything they have done to support us through our ordeal. Without them our time would have been a lot tougher.

This whole event plus many others in our life is what brings Infinity apparel to you. We created this brand as our way to give back to the community. It’s our mission to bring a smile to as many people as possible whilst using our profits from our apparel to use and make an impact on the greater community. Everyone deserves to smile and have their day made that little bit better through whatever means and that is what we do.

WHO HELPED US WHEN WE WERE IN NEED

HeartKids is the only national profit for purpose charity dedicated to supporting children, teens and adults affected by congenital heart disease all across Australia. Heart Kids also fund life-saving research, provide information and advocate for these families’ needs.

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RMHC are there to support the ever-changing needs of seriously ill children and their families. RMHC are there to achieve the best outcome for families by reducing the impact of their child’s serious illness which why they provide a range of programs to help families stay together and close to the care they need.

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The Queensland Children’s Hospital is a public children’s hospital in Stanley Street, South Brisbane, Queensland, Australia. Opened on 29 November 2014, it is the single specialist paediatric hospital for Queensland, caring for the sickest and most critically injured children from across the state.

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