Let me introduce you to a supermom and her little miracle micro prem daughter whose story gives me a reason to live for each day. Karin Anker has agreed to share Charlotte’s story with you as she tries to create awareness on preeclampsia, eclampsia and HELLP syndrome.
I am Karin. The daughter of two amazing parents taken far too early in life. A sister to an incredible brother, wife to a man whose strength and determination has seen us survive heartbreak and elation time and again. My greatest role to date, however, is being the mother of a sensationally stubborn and incredible young girl named Charlotte.
We had never envisioned ourselves as being parents. Two years prior to Charlotte we had fallen pregnant unexpectedly. After seeing two different doctors we received the news that our baby had stopped growing and had passed away. Two years later, to the day, we were back at our gynae for our 12-week scan with Charlotte.
Hearing her heartbeat for the first time was the most exciting and thrilling moment for us. We were washed with relief that she was alive, healthy and growing well! Our subsequent scans continued to go well, our little bean was growing and thriving as expected. At our 21-week anomaly scan, she flew with flying colors, almost, as her growth was slightly behind. My blood pressure was also ever so slightly elevated, but our gynae brushed it off to the nerves and fears experienced by most expectant mothers.
The day after our scan my feet suddenly started swelling. I called my gynae and was reassured that swelling was perfectly normal, especially considering I was having a summer pregnancy. Two days after that I developed a slight headache and when climbing a flight of stairs I felt faint and out of breath. A check of my BP indicated it was dangerously high and that I should immediately head to the hospital.
I stayed for 2 nights while my BP was monitored and I did a 24-hour urine test. The results of my stay and tests indicated the start of early-onset preeclampsia. I was sent home and placed on strict bed rest, no work of any kind and to check and record my BP every 3 hours, as well as check our daughters’ movements. I lasted a handful of days at home before my BP readings became erratic and Charlotte’s movements could only be felt after a strong cup of coffee or eating sugary chocolate.
Again I was admitted, hooked up to a BP monitor and being put to task with completing another 24 hours urine test. I was 22 weeks and 3 days pregnant at this point. I’d done the forbidden and Googled our illness. The prognosis was not good. Charlotte was not growing and because her gestational age indicated that she was not viable nursing staff were not allowed to use a Doppler to check her heart rate and movements. I drank copious amounts of caffeine to stimulate her into moving enough for me to feel her and be reassured that we had not lost her.
On the evening of our second night in hospital, my gynae walked in, stood at the foot of my bed and his expression said it all. For reasons still mostly unknown, my body was rejecting this pregnancy, our daughter. She was too small to survive. We would never make it to full term and he doubted that we would even make it to viability for her. Her growth and development were being stunted. My kidneys and liver showed signs of strain. The outcome was grim and his recommendation was immediate termination. He was cursory, there was little sympathy extended to me and zero hope that she would survive to live any form of a functional life. He informed me that he was on leave for a few weeks and was doubtful that I would still be there when he returned. As he turned and walked away Charlotte gave one of the strongest little kicks that I ever felt from her. Her affirmation to me that she wasn’t done fighting.
I had never felt such fear and hopelessness. The nurses called my husband to come immediately. I lay devastated with the thought that, once again, my body had failed our baby. A soft voice from behind a curtain started to console and reassure me. She asked me to hold on, to not give up, that the fight wasn’t over yet. I will never be able to express to Claire how much of an impact those words had on me. Here was a woman, a complete stranger, with her own daughter born premature and in the NICU, comforting me.
The following morning a new gynae walked up to my bed. Her positive energy gave me hope. She was compassionate, understanding and unwavering in her support. She promised to be with me every step of the way, regardless of our decision going forward. With her experience in my condition, she assured me that she would give us the very best chance if we chose to fight. That she would do everything in her power to keep Charlotte and I safe for as long as physically possible. She kept her word and has been with me on this journey ever since.
At 26 weeks and 2 days I developed what I initially thought was food poisoning. I lay with my head in a toilet bowl, sick to my core and unable to even stand, I summed up enough strength to reach up and hit the panic button for help. The reality was that my body was going into shock, my organs were shutting down. My lungs and body filling with fluid. Charlotte’s movements had all but stopped and that night nurses broke protocol and connected us to the Doppler to hear her heartbeat, it was strong and she stubbornly let us know she did not like being poked by kicking the Doppler off my stomach. After further tests came back with shocking levels of protein in my urine my new gynae came in, sat beside me, held my hand and told me it was time. We would be delivering in the next 24 hours. We were scheduled for a C-section the following morning.
I was placed on stronger BP medication and placed in CCU and connected to a Magnesium Sulfate drip to assist in hopefully preventing a stroke in myself and/or Charlotte.
Charlotte was born at 7:32am on the morning of 6th May, 26 weeks and 3 days gestation, 14 weeks premature, weighing in at 620g and 31cm in length. We were forewarned that it would not be a joyous occasion. In spite of me receiving steroid injections to help her lungs strengthen, they were still severely underdeveloped, she would not cry and she would need immediate assistance to breathe and get her lungs working. She did cry though, the gasps in the room from all the professionals present indicated that this was not expected. Her paed shouted out ‘oh my sweetheart, you are a fighter’. She was prepped and taken almost immediately to NICU, they allowed me to kiss her forehead. Her head was impossibly small, I could barely see it hidden underneath the impossibly small beanie that was far too big for her tiny little head.
I was closed up and sent to recovery before being taken back to CCU for a further two evenings of observation. I did not know it at the time, but during her delivery, my kidneys stopped functioning. A dialysis machine was placed out of my sight in recovery, staff checking my vitals every few minutes to see if my kidney function would return or if I would need to be connected. I’ll never forget the look of excitement on one of the nurses when I asked for a glass of water and thirty minutes later my catheter bag indicated that my kidneys were fighting back.
The next two nights were agonizing, the magnesium drip causes heat in your body that is indescribable. The fogginess in my brain from all the medications I’d received had me feeling anxious, terrified that my mind would never again be clear. The focus was on bedrest and recovery, I wasn’t allowed to sit up, I wasn’t allowed to see my daughter.
I met Charlotte on Mother’s Day. I could barely make out her tiny body in the dark, moist incubator. There were more pipes and wires than there was baby in that incubator. Her skin was paper thin, we could see the blood coursing through her veins. Her face was hidden underneath a CPap mask that was helping her breath. I wasn’t allowed to touch her, even if I was, I don’t think I would have, she was so tiny, so delicate and fragile. In spite of her appearance, her nurses assured me she was doing incredibly well, that she was surpassing their expectations. When I walked out of her room I met eyes with another mom sitting next to her daughter. She had the look in her eyes that indicated she knew exactly what I was going through, she smiled softly and told me ‘Your Mighty Mouse is a fighter’.
The name stuck and she has been Mighty Mouse ever since. Also ‘Diva’ as her nurses affectionately called her. She spent 92 days in NICU and in spite of many setbacks along the way, her stay was seen as exceptionally smooth and uneventful, even if it didn’t feel like that to us.
A Little Miracle
By all accounts, our Charlotte is a walking miracle. In terms of her prematurity and birth weight (almost half of what it should have been) she had a 50-70% chance of survival.
Survival without serious or minor lifelong deficits or complications is unlikely for many children born so prematurely. Her lungs struggled with Chronic Lung Disease and still now, at 2.5 years of age, if she catches a cold we have to monitor her closely and pray it doesn’t enter her lungs. Steroids used in an attempt to strengthen her lungs after birth had a high chance of causing Cerebral Palsy. She could have experienced brain bleeds clots, hydrocephaly, organ failure, NEC, Retinopathy of Prematurity and so many other terrifying issues.
She has struggled and continues to struggle with growth and weight gain. We’ve spent the last 2 years doing feeding therapy with her. She experienced reflux from 3 months old which caused feeding issues and oral aversion. She’s had NG feeding tubes and we’ve advocated ad nauseum against permanent feeding tubes since she was diagnosed. She has an overbite and high palate caused by being intubated for so long. Her lower jaw is very small and her tongue too large for her mouth. All of this has created an inability for her to learn how to suck and swallow correctly, a skill babies learn in their third trimester of pregnancy shortly before birth.
She has minor issues with muscles development and strength in her core, so we work extensively on encouraging her to play with specific equipment and exercises which help develop her muscle strength. She has inners in her soles to assist in supporting her week arches.
Developmentally she has been phenomenal with little to no delays in reaching the required milestones in her development. Her speech is advanced for her age.
Her immune system is growing from strength to strength. Micro preemies are born with no immune system to speak of, keeping her isolated for the first year of her life was hard, but necessary. She still falls ill with colds on a regular basis, but she is starting to recover from them as quickly as healthy full terms kids would.
Her height and head circumference continue to grow and catch up on growth charts, in spite of her weight gain not following suit. Regardless of how much or how little she eats, weight gain has always been a struggle, one which I’m finally making peace with, knowing that she will never ‘catch up’ to her peers in weight. And knowing that in spite of this ‘problem’ that she is healthy, happy and alive!!!
I initially started sharing our journey to highlight that being pregnant is not easy or pleasant for many women. Admitting that you may not necessarily enjoy being pregnant is more often than not frowned upon, and it shouldn’t be.
After I fell ill I used it to share information and updates to loved ones. Our Facebook page and blog progressed over time. Articles on aspects of prematurity, preeclampsia, HELLP syndrome were shared. I shared our progress in the hopes that it would reach someone facing the same situation and offer them the hope that they too would make it through to the other end.
I’ve had mothers from all corners of the world reaching out to connect, and sharing their journeys, asking for support and thanking me for highlighting a serious illness that affects nearly 5-8% of pregnancies.
I continue to share information about preeclampsia to create awareness. To encourage expectant mothers to trust their instincts and ask for second opinions if they start experiencing symptoms and are not being heard by their doctors.
I share our journey as a testament that as women, and pregnant woman in particular that we have a right to decide what is best for us and for our unborn children. That while termination is and should be an option that choosing to fight is equally relevant.
There are no certainties in life, and in particular in a journey like ours. I have met and become friends with many women whose stories have ended as ours has. Others who were not able to take their children home with them. I’ve met women online who advocated and created awareness of preeclampsia. One woman, in particular, ran a blog that focused on creating awareness of preeclampsia and tragically passed away after the birth of her third child as a result of preeclampsia and HELLP syndrome.
When asked if she had any advice or anything she would like to say to moms who have been through or who are facing similar situations, Karin had this to say:
She needs to know that nothing she did contributed to developing this illness. Nothing. At. All. She is not to blame. She is not a failure.
She needs to know that if her life is under threat and if her child is suffering and in pain, that choosing to terminate does not make her a terrible person. It makes her compassionate. It doesn’t negate that her child was loved and wanted. That she is still allowed to mourn her loss without shame. That she is allowed to choose her life and that of her other children.
She also needs to know that she can fight, for herself and for her child. That there is hope. That miracles do and can happen.
She needs to know that the choice is hers to make. To not feel bullied or pressured into making a decision based on one doctor’s prognosis. To get second opinions. To be informed as much as possible before having to make an almost impossible choice.
She needs to know that neither I nor anyone else can promise that it will be OK. But that there is hope and where there is hope there is light.
She needs to know that she should seek counsel in the form of a certified therapist who has dealt with something like this before. The stress and fear levels are not to be ignored. That her mental health is equally important as her physical health and wellbeing.
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