Miller’s Story – Awareness about Truncus Arteriosus

 

I wanted to share Miller’s story which is written so well by Steph to spread awareness about her beautiful Son’s condition as he is a true warrior and went against all odd’s and survived so please take the time to read <3

MILLERS STORY

Our son Miller was diagnosed at 13 weeks gestation with truncus arteriosus. As our pregnancy progressed his heart condition worsened, adding on severe pulmonary stenosis, a large VSD (ventricular septal defect) and hypertrophic cardiomyopathy (thickened heart muscles). We were told throughout the pregnancy to prepare for the worst as our cardiologists did not think he would survive the pregnancy or birth let alone the surgery as he had IUGR and was only a tiny 1.98kgs. (Smallest successful weight for this surgery was 2.5kgs).

Our sweet boy survived his first surgery at just 2 days old with all the odds against him. The day after his first open heart surgery Miller went into cardiac arrest and was placed on ECMO (life support). He spent a grueling 4 days on life support before being taken off.

At 9 weeks old Miller was deteriorating with infection after infection and had no chance of survival as he was unable to get off a ventilator and breathe on his own. So it was decided to take Miller for another surgery to try to repair his heart further.

He survived his second surgery and it was a great success. A few weeks after his second surgery he was able to get off a ventilator and on to cpap which was a massive relief.

Miller spent the first 6 months of his life in hospital as even though he was getting better it was 2 steps forward and 10 steps back. Everytime we got close to coming home he had gotten severely sick and it was delayed.

Our son is a strong fighter and these pictures show just that, he was put through hell and back just to survive and he will continue to get strong and smash ever goal that comes his way.

He will need more surgeries throughout his life to correct his heart but for now we have our son home and we are finally a family.

We needed these photos not only to showcase his scar and his strength but to have photos of our son as close to a baby as we could. These photos mean the world to us as we have no idea what each surgery outcome will look like and we get to look at these photos and remember just how sweet and strong our son has always been.

Backstory of my friendship and journey with the Daniel’s

I first spoke to Stephanie back in March 2020 at the very start of the pandemic when she reached out to me looking to have her maternity memories captured of her first baby Savannah. We were lucky enough to have captured this beautiful time for her that June as well as her newborn memories in July amongst this chaos. In June 2021 Steph and David welcomed another beautiful baby girl Spencer into this world however due to the Pandemic and her early arrival we sadly missed out on capturing both her womb side and earthside newborn memories. Having these captured to Steph meant everything so I left some props out at my front door for her to come grab and jumped on a facetime with her to talk her through how to capture her baby girl as a newborn as best as I could which she did amazing. Capturing this time is so important. Finally in February 2022 we got to capture sweet little Spencer. In June 2023 we captured Steph and her beautiful family’s memories before they were about to welcome beautiful Twin’s into the world. Then in August sweet little Maisie and Miller entered the world however beautiful baby Miller was born quiet unwell with a heart condition. Having newborn memories captured as you know is something very important to Steph so we were lucky enough to be able to capture beautiful Maisie when she was home in September with the plan to capture Miller’s memories when he was well enough to come home. After 6 months in hospital Miller was well enough to come home to his big beautiful family and we were so happy to capture their entire family and Miller’s memories last month! What a journey, this family has shown nothing but resilience, love, commitment, compassion and strength from the very first day i met them. They have been through so much but stay strong united right through. I feel so privileged to be able to capture such important milestones and achievements in their lives.

Thankyou once again Steph and David for choosing me to capture such important times in your lives, ive seen you both go through hell and back but always stay strong I admire you both and have the utmost respect for the two of you. You are bother such incredible parents to your babies I hope you know that! Your team work as you navigate through the challenges you have been thrown and the love you show to one another is beautiful thankyou for allowing me to be apart of it <3