In our July edition of our Preemie Family newsletter we learned about Charlotte Karamjit, who was born at 26 weeks, weighed in at 1 lbs 9.3 oz and was in the NICU for 181 days before going home. Read more in an update by her mother, Yashna, below.
by Yashna Rampursat, Charlotte’s Mother
“When the world brings you to your knees, you are in the perfect position to pray”.
I had heard this saying so often before, but it was only in this past year that I realised how true it really was.
Our daughter, Charlotte Aviela was a honeymoon baby, jokingly referred to as ‘Roman’ while still in utero and before we knew her gender, in reference to our honeymoon that we had spent in Italy. We were overjoyed yet shocked when we discovered we were pregnant just one month after our wedding. For the first five months we had a smooth pregnancy (although my husband would disagree if you count the mood swings!), until preeclampsia hit. We were forced to deliver her at 26 weeks because I had become so ill. I’m a medical doctor by profession and it was pretty scary to understand all that was happening to me. Naively, I thought that if I kept the symptoms to myself (headaches and back/tummy ache), I could keep her in me for longer. This wasn’t possible after I almost had a seizure, and Charlotte was born on the 18th of June 2014 at 8h03am. Her strong cry in theatre was the sweetest sound I had ever heard, and gave us hope…hope that was much needed and which saw us through the next 6 months. She weighed 1lb, 9.3oz (720 g), and was immediately ventilated and given surfactant. I could only see her 24 hours later and the sight of her with tubes and monitors was overwhelming. The guilt of failing to keep her safe engulfed me. I felt as if I had been robbed of a full pregnancy, I hadn’t had a baby shower, nor was my husband able to show off our baby from the nursery window to our visitors. No. This was not a normal situation. There’s nothing normal about leaving your baby in hospital once you’re discharged.
Our baby spent her first 181 days without us, was injected, prodded, ventilated, transfused and under artificial light for that long a time. She was on and off the ventilator 4 times, on the oscillator 2 times, had one of the worst cases of BPD the unit had seen, suffered from numerous chest infections, had a PDA, a grade 2 intra ventricular hemorrhage, had liver damage due to prolonged total parenteral nutrition (and we were told that she may need a liver transplant for this), had metabolic bone disease of prematurity and a femur fracture. Her heart stopped four times, requiring resuscitation, once before my very eyes. My reaction of shock and inability to move made me finally realise why it is not recommended that doctors treat their own family. We were counselled that she may have brain damage due to the lack of oxygen to her brain.
It was a difficult time. We fed off each other’s anxiety and almost went insane…until we surrendered to God and requested that His will be done…and then something miraculous happened. It was as if there was a shift in the universe. We began to see God’s hand in everything. The tiny achievements – the minuscule daily weaning of the ventilator settings, the few grams that she gained here and there, even things outside the NICU such as the sign in the hospital coffee shop that said “This too shall pass”, and narrowly missing an accident on the way home from the hospital one night, because we had spent a tad while longer than we usually did. A conformational change had occurred. We knew we would never be the same again. We saw God’s grace in everything and thanked Him for it. Each time she had a setback she miraculously bounced back. Medical science could not explain how she remained alive. She fought like a gladiator.
We begged God to keep her alive. We just wanted to be her parents, to love her and have her home with us. We finally got what we wished for. She came home a few days before Christmas 2014, on a feeding tube, oxygen and 14 different medications. It was a glorious day, but also scary because we no longer had the backup of the NICU staff. Today, 6 months after bringing her home, she is off the feeding tube and oxygen and is now only on daily vitamins. Establishing feeding was a huge hurdle to overcome, and she is growing, slowly but surely. She thankfully did not need the liver transplant. She can hear, see, responds well to us and is a happy, smiley baby. She has a sassy personality and isn’t afraid to let us know her likes (chocolate, and being carried) and dislikes (carrots and being put down!).
This whole experience has been life changing. It has made me a compassionate doctor (as I can now relate to the other side), and has made us thankful for what we have. We no longer sweat the small stuff. She turns one later this week. As I reflect on the past year I am in awe of how much one tiny baby has taught us in such a short space of time. Her fighting spirit is an inspiration to all who know her.
Sometimes at night, I watch her as she sleeps and I hold her little hand (scarred from the many injections) and feel so honoured and thankful that she is next to me. We don’t know what the years ahead will bring…but we are optimistic. We know that God has the last say and not medical science (this coming from a former cynical doctor) When God is in it, there is no limit.
Photo Credits: Family Photo – Iloma Stemmet; Remaining Photos – Reuben Karamjit
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