In DECEMBER 2016 I left the hospital with my two week old daughter, Lamees, and embarked on a 17-hour flight and knew she could die in my arms.
I was scared, but I had promised to sit still and not say a word until we landed, even though it meant holding her when she got cold.
I had about 24 hours to get her for safety; our trip would take exactly 22 hours. There was no room for error. I held my hand on my chest to discreetly monitor her respiratory rate for the entire journey. I figured almost every breath she took.
She was born with a heart disease 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 and they sent her home to die.
While I discussed her palliative I secretly organized her passport and booked her plane.
I had no idea whether the surgeon would work at the other end, but I had no more time to wait. She already began to show signs of distress.
I spent my days and nights investigating everything about her ductal arterioses (the ship, the heart helped keep her alive), which was maintained by a drug called prostaglandin. The moment they interrupted the drug the clock officially started – not a single person could tell me how long her ductus would remain open. Although I received as much information as I could while fake cry, I had to be careful not to ask direct questions that would give away our plan.
The general consensus was about 24 hours, but my research showed that dehydration would close it before and height would keep it open longer. It was a balanced action.
I was also told that her oral feeds could expedite her death due to increased stress on her heart and the risk of necrotizing enterocolitis (an infection that can kill newborns). I decided on a bottle of water, but her heavy tie would make feeding difficult.
I had researched enough to know that airlines often reject passengers on prostaglandin. The airline could not figure out which meant I could not use my health insurance and get her transport safely in an incubator with full medical support. Although I struggled very hard to keep IV access, I was told it would be removed by discharge.
Without help and literally at 11 o'clock, I managed to grab every subject I needed to insert another IV line. A vial of a small drop of remaining prostaglandin (purchased the day before – just in case) was in my bra, together with 500 ml IV dextrose. The problem was that I could not insert the IV cannula, that was the only thing I had never perfected in the primary school … I just hoped there would be someone on the run that could find a vein.
I could not ask for help if we were not close enough to our destination – redirecting would be a disaster.
We arrived at the airport 10 minutes before check-in closed. The plane had been overbooked – fortunately, more passengers had not shown and a friendly employee told them I had already checked in online (I did not have).
I fled with a blanket that covered me while letting me breastfeed, removing the cap on the syringe containing the small drop of prostaglandin and holding it upright as we stepped up to the height. I could not risk losing any of the 0.2 ml, whose expanding air forced to open the syringe. I knew that I needed the fabric on the lineage if a change in pressure meant that her ductus closed. I may also have to fly with her to another surgeon.
The surgeon came in to meet us when he heard that I had arrived. He was absolutely amazed and said how much he admired my bravery and determination. I think this is one of the reasons why he decided to do such a difficult operation, he put his heart and soul into it. He did not want to let me down.
I sent a friend to OT during the operation to update me from within. Towards the end he told me what the surgeon had said: "When I die if I should ever be punished, just continue to give me this surgery, it's one of the hardest I've ever done."
My baby gave up her fight four days later, but I'm in peace knowing that I gave her a chance, even though it was the most scared I've ever been in my life. I was scared, but I did it anyway. Love makes you do things you never thought you could, love makes you brave.
I wrote a song to Lamees, called Thoughtful . I missed her so much, and 10 months of sadness had not changed it (I now know it never will). In the song I talk about that sadness and how I wish things could have turned out differently.
She was my rainbow family (the child born after a loss). I wish I could change my future and have her by my side.
This story and these pictures (no makeup and let's be honest, look horrible after the trial) is not what an EDM artist will have attached to them in their career. I usually keep my music and my personal life very different, 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 made her proud.