Aaron and Megan

Our Story: At 21 weeks our baby girl was diagnosed with the rare heart defect Ebsteins Anomaly, her case was severe and we were offered a medical termination where she would have had to be delivered stillborn. We decided to decline this and fight for her and give her a chance of life after seeing miracle stories we had found from parents of children with severe ebsteins. After numerous appointments and scans, all of which had a massive impact on the mental health of both of us, being told we wouldn't make it to 28 weeks, then 32, then that she would most likely to be a stillborn. we were able to make it to 38 weeks and 3 days pregnant before getting induced at LGI. Iris Rayne was born 14/11/2023 at 2:55am. She was immediately put on a ventilator because due to her heart being so enlarged and taking that much room in her chest it had prevented her lungs from developing enough to support her body (hence needing a ventilator). The first day of her life she wasn't expected to make it through the day, they didn't know if her kidneys or liver were working and was on 8 different types of medication. Iris fought so hard and managed to prove all the doctors wrong and showed all the signs of her kidneys, liver and some signs that she might be able to come off ventilation by allowing her pressures to drop to 18 and by day 10 she had dropped to only 3 medications and come off nitric oxide. Day 10 we had a cardiologist consultation where they actually started talking about surgeries to fix her heart. Which after a very difficult 10 days was the most hopeful news we had heard in 6 months at least. The only problem was that the surgery required her lungs to be developed enough as it involved attaching an artery from her neck and thigh to her lung and heart to create a single ventricular pathway (this obviously gave us hope) This was the best day we had and we even got to hold her for the first time. Day 11: Iris started to swell, so she was put on medication to try reduce it, the consultants thought this would go down within 24 hours. She had her first episode of tachycardia, where her heart rate shot into 230s bpm. Luckily she managed to get out of this herself by applying loads of ice to shock her heart to slowing down. Day 12: the swelling got so much worse her arms, tummy, face. 7am we got called into hospital because she had another tachycardia episode where her heart rate shoot up to 236bpm again only this time they had to give her medication to come out of it. I noticed the swelling had got so much worse her arms, tummy, face again they said that they still couldn't try her off the ventilator till the swelling went down. On this day we were told that she 48 hours to show improvement on other meds to reduce swelling because after this they had no other options to try. This was our last hope, little did we know that the end was closer than we ever thought. They opened up visiting so we could have as many people as we wanted to see her (which is when you know it's serious) and we got her baptised. Come 11:30pm on 26/11/23 Iris's lungs were starting to fail. One point her oxygen dropped to 0 (even while her oxygen level was at 100%). They managed to bring her oxygen back up and it went back up to the 90s so we thought she was in the safe zone. It was at that point that I knew Iris wasn't making it to the morning and it was at that point we had to make the most heartbreaking decision that any parents could ever have to make; to either hold her in our arms and show her as much love as we could in her last moments and let her pass peacefully or keep trying to bring her back every time, we got informed that CPR would most likely not work because due to her heart defect the blood didn't flow the same way as ours so it would be likely that if she did need it that it would be a traumatic passing in her cot. Me and Aaron decide that if her oxygen dropped to the 40s again (still holding onto the tiniest string of hope) that it was time to hold her and let her be at peace. We knew that she was done fighting and her little body couldn't take it, and we knew that our hearts were telling us to fight because we couldn't bear to lose her, but we knew it wasn't fair on her anymore. Day 13: 27/11/23 4:45am we had nodded off next to her after refusing to leave her side and woke to alarms going off on her machines. That memory we will never get out of our minds and will haunt us both for the rest of our lives. we both knew what that meant and it was the most empty pit and heartbreaking feeling you could ever think of. We knew it was time to say goodbye. In her mummy's arms we walked to a quiet room with her ventilator, morphine and sedatives to the place where we had to remove her ventilator. 5:30am the tube was removed and she didn't even attempt to breath, her poor lungs just couldn't take it anymore. She was passed to Aaron where her big heart took its last beats in the comfort of her daddy's arms, and just like that our little girl was gone and our world was shattered. Iris Rayne Hall-Ward 14/11/2023 - 27/11/2023 Without the support of The Sick Children's Trust, navigating our situation with our baby girl would have been incredibly challenging. This organization has been our lifeline, ensuring that we could be by her side when she needed us the most. The Sick Children's Trust is a beacon of hope for families facing serious illnesses with their children. They provide free, comfortable accommodation near major hospitals, allowing parents to stay close to their sick child during treatments and medical care. This invaluable assistance not only eases the financial burden but also ensures that families can offer unwavering support and love to their children, fostering a sense of togetherness during difficult times. We are forever grateful for the Sick Children's Trust for making a significant difference in our lives. We are hosting The Iris Yoke Run in aid of The Sick Children's Trust. This will be held on the 23rd December 2023 at 10am at WF11 Strength Club, Unit 5 clifton forge business park, forge hill lane, Knottingley. Events include: Car and Van Deadlift (prize for most reps in 60 secs, men and women's) Yoke Walk Challenge (13 mile target) Anyone welcome to join! Let's see how far we can get it. (20meters back and forth) Raffle Balloon Release in memory of Iris All proceeds go to The Sick Children's Trust