13 precious seconds
One year and 10 months ago, I birthed my firstborn son. My second child. During pregnancy, we were told a 50% chance of survival. My son had a congenital heart defect, hypoplastic left heart syndrome. He was 10/10 severity. An intact atrial septum and a 5 mm duct. (He required 10 mm to operate.) My baby was born at 5:09 am on February 20, 2018, surrounded by a medical team.
I had only 13 seconds to hold my baby, alive and free of wires. 13 seconds. He cried and it was the most blissful sound I’ve ever heard.
He was whisked away after 13 seconds, and they tried for 45 minutes to put him on the ventilator. He was being cheeky and kept pushing the tubing out with his tongue. But at 1 hour old, my precious newborn suffered a cardiac arrest.
a heartbreaking scan
The cardiologists managed to get him on the ventilator, but his stats were low. 42%. I was in the middle of being stitched up, and we were rushed round to my son as he was in critical condition. The minute I got there, I stroked my little boy’s shoulder and told him how much we loved him and how proud of him we are. His stats instantly shot up to 93%. Our baby boy could feel us with him and he fought.
They then began scanning his heart to get an in-depth echo to see if he qualified for surgery. I read their lips and the consultants discussed my son’s case. “We can’t operate,” she muttered.
Nobody else knew what she said. But I was inconsolable. I couldn’t bring those words to my lips—I couldn’t breathe those words. My partner was looking at me in fear willing me to say it, but I couldn’t. I just couldn’t, because saying it meant it was real.
Every moment a treasure
Then 10 minutes later, we were taken to a separate room and given the option to keep him on the ventilator or take him off and spend time with him cuddling him. We were told keeping him on would not save his life. The ventilator was not helping him. He was on 100% oxygen and still on stats of 40. We chose to treasure every moment with our baby.
He passed away in his daddy’s arms at 2:30 pm. Our worlds shattered. We spent an entire month with him before his funeral. I sat there singing “Dancing in the Sky” to my boy in the funeral home as I held his hand like I did while he was in NICU. That day with him will never leave my mind. I’ll treasure every second.
same diagnosis, new hope
New Year’s Eve 2018, I found out I was pregnant again, with our rainbow baby. We hoped and hoped our baby would be healthy. We had many scans to block out that fear that something was wrong. At 14 weeks, we found out she was a girl! Two weeks later at 16 weeks, we went for our rainbow pathway scan to find out our baby didn’t have a four-chamber view—suspected hypoplastic left heart.
We then went to Manchester two days later to confirm the diagnosis. 75% survival chances we were told. Same diagnosis, different outcome? We had hope. Our baby had a double outlet, so her blood was still flowing around her heart. I went out and bought everything. We were so hopeful.
preparing for another loss
Four weeks later, our world crumbled, again. “Your baby has TAPVD. This mixed with hypoplastic left heart is critical. Your baby has 0% survival rate as our surgical route won’t work for your baby.”
I couldn’t give up. We traveled over 300 miles. We contacted surgeons abroad and got multiple opinions. We had MRIs, scan after scan, and we pushed as much as we could in the hope that someone could offer her a lifeline, that someone would take a chance. We got to Evelina and were told if her lungs were okay they would operate. It would be very risky, but they would. So, we did an in-utero MRI to detect any lung damage.
The results came in at 36 weeks. “Severe lung damage in the right and slight in the left.” Lymphangiectasia of the lungs. And that was it. No one gave us hope. Our baby’s chances went from slim to slimmer. “Hours” we were told. We’d be lucky if she lived longer than 24 hours. We prepared to lose yet another baby.
holding on in hospice
We delivered our baby girl at 38+6 on September 6, 2019, in the bereavement suite. We were not monitored in case her heart stopped while I was laboring. I labored for two hours 10 minutes, and she was born at 8:48 am. She was born crying!
We held her constantly for two days straight, treasuring every single minute. We took in every breath. We slept in shifts for an hour each at a time, scared to put her down. She was defying all odds. She was feeding, crying, winding, cooing, everything a healthy baby would do. The doctors told us her cooing was her lungs failing and to be prepared for it to be a few hours that she had.
We went from there to hospice to be able to spend time with her, away from the hospital, with medical staff around. She got better and better. She fed for nine days via a bottle!!! She had one episode while bottle feeding and was placed on a feeding tube. At 1 week old, we had a scan to see what was happening in the hope that things were different when she was born. But nothing changed. “She shouldn’t be here,” he said. “She’s somehow managing to balance herself out.”
My baby was the toughest little girl around. Even medical teams were shocked. But they said that it was inevitable. They could not operate as it would take away precious time and they refused to do that. So, we went back to hospice, heartbroken.
cherishing every unexpected day
We went on days out, memory-making. We went to Chester Zoo, Bluewater Aquarium, Cheshire Oaks. We treasured every second. She turned 2 weeks and hospice threw her a two-week birthday party while we slept! I woke up so overwhelmed.
Four days later, we did what we never thought we would do. We went home. Something most people take for granted we treasured. The one-hour-30-minute journey was nerve-racking. A member of the hospice staff followed us in case my daughter stopped breathing and needed support.
When we got home, we spent two weeks living like a normal family. It was the best experience. We didn’t feel like she was poorly. She had no episodes, she didn’t go blue, in fact, her color was better and better. Until one day she really struggled. From 2 am until 10 am, my daughter was having constant apneas. She would breathe heavy, then stop breathing for a few seconds, then come back breathing heavy and panting. And there was nothing we could do but watch as my baby struggled. She was nearly 6 weeks old.
two hearts carried within one
We were told to prepare for the worst. We went to the hospice that was local to us. The next day, she was practically back to normal. But we reduced her feeds and every time we tried upping them again, she struggled. So, we spent two weeks there getting her back on track.
She got better, and we managed to take our baby down the lights in a princess carriage that she loved! She slept the whole day, and the minute she saw the lights, her eyes were wide open, mesmerized! A few days later, we went home again. Our baby celebrated her first Halloween! A milestone we never thought would happen!!!
Then, one-and-a-half weeks later at 8 weeks 4 days old, she picked up a cold. We spent the next few days having hospice staff come and see her, and we ended up in A&E. We then decided we needed to take her back to the hospice, and at 9 weeks and 5 days old, my baby took her last breath. Ivy fought battles that nobody thought was possible. She defied ALL odds!
I have two incredibly beautiful, brave, and strong babies watching over me. I love you both so much.
Lucas-Jay Mark Barton & Ivy-Rose Emilia Barton