Noah & Lily, 26 Weeks

Miracle Mum Sara shares Noah & Lily's story:

"Noah & Lily were born at 26+1wks gestation following a premature rupture of Lily's membrane 4days earlier. Lily had been diagnosed with Double Inlet Left Ventricle at the 20wk scan (a congenital heart condition affecting 1 in 20,000 babies, where the entire right ventricle is severely underdeveloped and therefore redundant). Pregnancy was expected to progress normally and the survival rate was high, we just had to be prepared for the multiple surgeries Lily would have to have in her first few years of life.

When my waters broke so early, the fear of going into labour and having premature twins was nothing compared to being told that Lily ("Twin A" at the time) would be too small to undergo the necessary heart operations, so she would unlikely survive longer than a day or so after birth. By that point, I had been admitted to KEMH for monitoring. I cancelled my Baby Shower, booked for the following week. I felt numb with shock. I knew that babies born at 26wks had a survival rate of over 90%; and the fear around the associated developmental risks etc. that came with extreme prematurity were temporarily clouded by the fact I was just so desperate to give birth to two healthy babies. I prayed so desperately for Twin A to be our miracle and beat the odds she was given.

I went into labour 3days later, at 6pm on a Friday night. After 14hrs of contractions, I finally had an epidural at 8am the next day. That day was a blur. I remember my husband Chris finally getting some sleep on the floor after being up with me all night, as soon as my mum arrived. I laid on the bed with my hips flexed, not moving, for 12hrs; because Lily's heart rate monitor had to be positioned so low. Dilation was steady but slow, so at 8pm I was induced.

I gave birth to Lily Eva (831g), who gave a tiny (and unexpected) cry when she was placed on my chest briefly before being intubated. Noah Patrick (951g) came in a rush 5mins later, had his quick cry and cuddle with Mummy and then was also taken off to be intubated like his sister.

I was taken into theatre immediately afterwards as I had retained placenta, which was a horrible experience. I laid in the recovery ward feeling completely and utterly destroyed, desperate to see my babies. Chris and I agreed on their names via text whilst he and my mum stayed with them in the SCN.

At around 2am, Chris, the Cardiologist and Neonatologist came to see me and explained that both the babies were stable for now, but Lily was not expected to make it through the night. We made the horrible decision to consent to "do not resuscitate" if anything should happen. We visited them afterwards and I held their tiny hands. I don't think I have to explain what that night felt like for Chris and I.

By some miracle, the following morning, Lily was still with us and stable. We had another meeting in the afternoon with the Cardiologist and Neonatalogist who explained that (following a meeting with other specialists that morning) we could continue to give Lily a medication to keep her ductus arteriosis open so that she could maintain circulation, and hopefully grow enough to receive surgery on her heart - 2kg. It would not cause any discomfort or pain. However, it had serious potential side effects such as brain bleeds, gut perforation etc. The plan was to hope that Lily would dodge those issues and make it to her goal weight.

Even when they were both so tiny and young, it's amazing how personality shone through. Lily - feisty, wriggly, a fighter who got off the ventilator 3days before her brother. Noah - chilled out, a little lazy, loves a hand hold. Noah needed a blood transfusion and had some mild heart issues; thankfully these are now resolved.
At 11 days old, after being relatively stable and even gaining weight, our worst nightmare came to light when Lily was diagnosed with NEC (necrotising enterocolitis - ruptured gut). Surgery is usually performed but only had a 50% success rate. Unfortunately, they were not able to operate because of her heart condition. They did attempt to drain the fluid and load up the antibiotics; but on 20th Jan (at 12days old) our beautiful brave girl passed away in our arms.

From that point on, our Noah did not have a single setback. He was on CPAP for 8wks, High Flow O2 for 5days then finally breathing independently at 36wks gestation. We got to bring our Noah home after 12wks (38wks gestation). He's now 5mths corrected, meeting all his milestones and in the 30th percentile for weight. We really do believe Lily passed on her strength to her brother when she left this world, and we have a special "Lily shelf" in Noah's room so she can always look over him. We are so proud of both of our babies 💜"



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