written by Finn’s Mom: Aoife

I would like to introduce Finn Lee Delaney and this is our story.

Finn’s story began with a gender scan on the 14th of April, 2013. It was a Sunday morning and Finn’s lovely godmother-to-be, Nichola, was treating me to a gender scan and I will always be thankful that she did.  As soon as the sonographer started the scan I knew something was wrong.

She went on to tell me I was expecting a little boy, followed by telling me there is a problem with his heart. My nightmare was only beginning. I had weekly scans along with detailed scans of Finn’s heart. The detailed scans showed Finn had hypoplastic right heart, tricuspid atresia, pulmonary stenosis, a VSD and a ASD. I was offered a medical termination but I knew this was not an option for me. I was not giving up on my son. I was going to fight for him and with him.

Then on June 5th more bad news was thrown our way. I was told Finn also had Edwards Syndrome and would not live for more than a few days.  I was told comfort care would be the only option for my baby and if he got into difficulty during birth they would not assist him.  So I decided to fight harder for my son. I was not giving up on him before he entered this world and I would not let the doctors give up on him either.  I accepted the fact Finn was going to be born a CHD warrior but deep down in my heart, I knew they were wrong about Edwards Syndrome. I refused amniocentesis and told them to wipe Finn’s slate clean and test him for everything once he was here safely.

On July 16, 2013 my beautiful baby boy was delivered by C-section after three failed inductions. When he arrived, he was pink in color.  Yes, pink! We expected a blue baby.  I was a emotional wreck and lucky to have my mam by my side.  Finn weighed in at 5lb 6oz and was baptized at birth. They whisked him away and started him on medication. It was 3am before I got to see him and briefly cuddle him.  The following morning he was transferred to Crumlin Children’s Hospital by ambulance. I was terrified I couldn’t go with him and he would be on his own until I got there. The following day. I was discharged from the maternity hospital and I got to go be with Finn.

On day four, Finn was not doing well on the medication.  He had sleep apnea and was forgetting to breath.  They moved him to PICU and had an emergency surgery within 24hrs after her was transferred. I was devastated.

On July 21, as his surgeon talked me trough the surgery, I made every excuse under the sun to stop him from performing the surgery, but it had to be done,  At just 5 days old, Finn had his first open heart surgery. My little brave warrior did fantastic and was able to come home just 10 days later. It was fantastic having him home and his big brothers and big sister loved having him home.

On the 25th of November, Finn had a cardiac catheterization to check his pressures.  They also had to enlarge the hole between his upper chambers (atrial septal defect) with a balloon (septostomy catheter). December 9th was surgery day for open heart surgery number two. Having to hand Finn over for a third time that year was unbearable. Finn didn’t do well after this surgery; there was talk of them taking him back to surgery again. The first 24 hours after surgery were so critical and Finn was having a rough time. He was losing a lot of blood and his doctors advised me to have someone else come to the hospital with me so I wasn’t alone in case there was bad news.

My mam arrived and that night was the longest night of my life. I was terrified. But amazingly, Finn pulled trough he didn’t need to go back to surgery. The blood loss settled and doctors were able to control it over night.

Finn is the strongest bravest little fighter I know. even though there are more surgeries ahead and a possible heart transplant, I know my baby boy has got this.  We are in this together and we won’t let CHD win this fight. Finn is now a beautiful happy smiling 14 month old and he amazes me every day, I am so glad I didn’t give up on my little warrior.  He has changed my life for the better and I will fight CHD with him until the end.

Follow Finn Lee on Facebook: http://www.facebook.com/Bravewarriorfinnlee