In December 2016 I left the hospital with my two week old daughter, Lamees and boarded a 17 hour flight knowing that she might die in my arms.
I was terrified, but I had vowed to sit quietly and not say a word until we landed, even if that meant holding her as she grew cold.
I had approximately 24 hours to get her to safety, our journey would take exactly 22 hours. There was no room for error. I kept my hand on her chest to discreetly monitor her respiratory rate for the entire journey. I was counting almost every breath she took.
She was born with a heart condition called Hypoplastic left heart syndrome, unfortunately her two missing fingers and small size meant that our hospital decided against surgery, nothing I did or said would change their mind, they sent her home to die.
While I was discussing her palliative (end of life) care I was secretly organizing her passport and booking her flight. I had no idea whether the surgeon at the other end would operate but I had no more time to wait. She was already beginning to show signs of distress.
I spent my days and nights researching everything about her ductus arteriosis (the vessel her heart relied on to keep her alive) which was kept open by a drug called prostaglandin.
The moment they disconnected the drug the clock officially started – not a single person could tell me how long her ductus would remain open. Although I gained as much information as I could while fake crying I had to be careful not to ask direct questions that would give away our plan.
The general consensus was around 24 hours, however my research showed that dehydration would close it sooner and altitude would keep it open longer.
It was a balancing act.
I was also told that giving her oral feeds might hasten her death due to increased strain on her heart and risk of necrotizing enterocolitis (an infection that can kill neonates).
I decided on a bottle of water, however her tongue tie would make feeding difficult.
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I had researched enough to know that airlines often reject passengers on prostaglandin. The airline could not find out, which meant I couldn’t use my medical insurance and have her transported safely in an incubator with full medical support.
Although I fought very hard to keep the IV access I was told it would be removed at discharge.
Without any help and literally at the 11th hour I managed to get hold of every item I needed to insert another IV line. A vial with a tiny drop of leftover prostaglandin (procured the day before – just in case) was in my bra, along with 500ml IV dextrose.
The problem was I couldn’t insert the IV cannula, it was the one thing I had never perfected in medical school… I just hoped there would be someone on the flight who could find a vein.
I couldn’t ask for help if we weren’t close enough to our destination – being rerouted would be a disaster.
We arrived at the airport 10 minutes before check in closed. The flight had been overbooked – luckily several passengers had not showed up and a kind staff member told them I had already checked in online (I hadn’t).
I sat on the flight with a blanket covering me while I pretended to breastfeed, removed the cap on the syringe containing the tiny drop of prostaglandin and held it upright while we ascended to altitude.
I could not risk losing any of that 0.2ml if expanding air forced open the syringe. I knew I might need that drug on descent, if change in pressure caused her ductus to close.
I also might need to fly with her again to another surgeon….
The surgeon came in on his day off to meet us when he heard that I had arrived. He was absolutely amazed, and kept saying how much he admired my bravery and determination.
I believe this is one of the reasons he decided to do such a difficult surgery, he put his heart and soul into it.
He didn’t want to let me down.
I sent a friend into the OT during the surgery, to update me from the inside, towards the end he told me what the surgeon had said:
“When I die if I ever needed to be punished just keep giving me this surgery, it is one of the most difficult I have ever done.”
My baby gave up her fight 4 days later, but I am at peace knowing that I gave her a chance even though it was the most afraid I’ve ever been in my life.
I was terrified, but I did it anyway.
Love makes you do things you never thought you could, love makes you brave.
I wrote a song for Lamees, called Thoughtful. I was missing her so much, and 10 months of grieving hadn’t changed that (I know now that it never will).
In the song I talk about that grief and how I wish things could have turned out differently.
She was my rainbow baby (the baby born after a loss), I wish I could change my future and have her by my side.
This story and these photos (no makeup and let’s be honest, looking terrible after that ordeal) aren’t what any EDM artist would want to have attached to them in their career.
I usually keep my music and my personal life very separate so I hesitated a lot with this but the link to the song is in my profile for my Quora readers if you want to hear it.
I wish she knew how much I miss her and I hope I did her proud.