Our sweet, tenacious daughter was born on 6 May 2016 at 26 weeks gestation – 14 weeks too soon – and tipping the scales at a mere 620g. She was delivered via an emergency C-Section at 7:30am due to my preeclampsia (diagnosed at 22 weeks) progressing into HELLP syndrome.
We were told she wouldn’t cry at birth – that she would be too small, too weak and fragile. But cry she did. It shocked everyone in theatre and it was the first indication of how strong-willed and determined our daughter was going to be in the days, weeks, months and years to come. Little Charlotte spent 92 days in the NICU and, by all accounts, she had a relatively smooth and uneventful stay.
Her four greatest hurdles during her stay were her patent ductus arteriosus (PDA) that wouldn’t close without Dexamethasone steroids, her severely underdeveloped lungs struggling to mature, low iron levels (which required several blood transfusions) and weight gain.
From the very beginning, Charlotte struggled to gain weight. She struggled to process EBM (expressed breast milk) and struggled to increase the volume of milk intake. She was also unable to latch for breastfeeding; she would suck and immediately pull away and cry. When she came home, she weighed 1.92kg and was being bottle fed my EBM.
She struggled to cope with increases in volume and even an extra 1ml would upset her. We continued trying daily to get her to latch, without success. We consulted with two lactation consultants but saw no improvement. Eventually, my milk dried up and I chose to move on to formula, as receiving tested and approved donor milk out of hospital is not an option in South Africa.
Every day was a struggle. The more answers I sought, the fewer I got. We tried every brand of bottle and teat on the market including the Habermann, which is a specialised bottle and teat for infants with cleft palates, and we tried different techniques of feeding. We spent every waking moment online looking for answers that we couldn’t find with our local specialists.
We had to admit her on a regular basis for dehydration and low weight gain. She wasn’t sleeping and she cried constantly from what appeared to be pain and exhaustion. Her paediatrician diagnosed her with reflux, but the various medications we tried made little improvement. Nobody seemed to know what was wrong and she was refusing feeds. When she did drink, she’d projectile vomit after every bottle.
Our lives revolved around feeds. We started using laminated charts to mark how much she drank and how much she threw up. We consulted with paediatricians and infant dieticians over the best formula, moving between so many different variants and specialist formulas that I lost count. We were encouraged to supplement her nutritional uptake by adding additives to her bottles, but there were no suggestions on how to find out what the root cause of her inability to take a feed properly was.
Eventually, we were again admitted for bottle refusal and dehydration, and again I had to watch the NICU staff insert an NG tube to my five-month-old infant. She was set up for a 24-hour reflux test, which was incredibly traumatic for both of us, and the results showed that although her reflux was mild, it occurred almost constantly throughout the day.
“Charlotte tolerated very little; she struggled to swallow, choked and gagged often or simply refused all together.”
The morning of our release, a nurse from the NICU remarked that she appeared to be sucking her bottle incorrectly and suggested we consult with a speech therapist to assess her orally. We had tried this several times with previous admissions, but the recommended therapists never responded to our calls or emails. With no real answers or solutions, we were sent home with well wishes.
By 6pm that evening she hadn’t taken a drop of milk. She refused when she saw the bottle in my hand and screamed until she passed out. I was depleted and phoned a friend and wept that my daughter was starving to death and nobody cared to help.
My husband took us back to her old NICU that evening and begged for help. She was given an NG tube and I was able to feed her and settle her and we headed home, with no idea of what to do next. The following morning, I made more calls and got in touch with a dental specialist in town. She stuck on a rubber glove, shoved her finger down my daughter’s throat to test her gag reflex and announced she couldn’t help – and that our daughter would never drink from a bottle and would require a feeding tube indefinitely.
Desperate, I started posting for help online and we got feedback from people all over the world offering to help us. Knowing that we weren’t alone made a huge difference and gave me the energy to go forward. A friend contacted me shortly after seeing my post and put me in touch with a local occupational therapist. Emma was phenomenal! She listened to our story, she was gentle with Charlotte and took her time to run her assessment and at the end, she promised that she would do whatever she could to help us.
“We also threw out all the hard and fast rules of how to feed infants; we tossed away the feeding charts and started listening to our daughter over above anyone else.”
We immediately started with her desensitisation programme, which involved getting Charlotte to accept a dummy and slowly introduce milk through a tiny hole in her dummy during feeds with her NG tube. We spent a night in hospital to receive training on how to manage and care for her NG tube from home and our paediatrician agreed to give us six weeks’ grace before we would have to reconsider approving a permanent feeding tube directly into her stomach.
Within a week she was sucking a dummy; within two weeks she was actively drinking milk through it and within five weeks she pulled her NG tube out herself and we decided to keep it out. We also threw out all the hard and fast rules of how to feed infants; we tossed away the feeding charts and started listening to our daughter over above anyone else. She started thriving, smiling and getting back on track with her milestones. She still threw up regularly, but she wanted to drink.
Her growth was still slow and we looked forward to her being ready for solids, which we had been promised would be the answer to all our prayers. But this couldn’t have been further from the truth. Charlotte tolerated very little; she struggled to swallow, choked and gagged often or simply refused all together. We tried traditional spoon-feeding, baby-led weaning and a combination of both and stumbled through the next year with her never improving and us changing from one formula and supplement to another to keep her nutritional requirements met.
After a year of no real progress with solids, we realised that we needed to find out what we were still missing. I remembered a therapist who had contacted me the previous year offering help and called her back. We booked our flights and headed to Johannesburg to meet Andrea and her team, who were phenomenal to say the least!
They embraced us and we spent an afternoon at their centre, complete with a dietician, occupational therapist, speech therapist and psychologist who evaluated us as much as they evaluated her. They allowed Charlotte to be herself and placed absolutely no pressure on her to do anything she wasn’t comfortable with. At the end of the day, they validated our concerns and confirmed that there was an issue with her oral development.
She had a prominent overbite, extremely high palate and much smaller lower jaw – concerns I’d voiced many times before due to family history. Charlotte didn’t have any oral coordination. She didn’t know how to chew and break down food. She did not know how to use her tongue to move food. She would use her hands to push food into her throat or use gravity to encourage soft foods to slide into her throat.
We started working almost immediately on their programme and quickly started seeing results. They encouraged food play without the pressure of needing to actually eat what she was given. We learnt so much about how a child develops a relationship with nourishment through interaction. Knowing that there are specific steps involved in encouraging confidence in our daughter to try new foods has been a turning point in all our lives.
We work daily with new textures, flavours and aromas. We encourage messy play and I make sure that she is involved in some form of food preparation and involvement almost every day. We also found a small day care for Charlotte, and being surrounded by peers who enjoy their meals has also encouraged her to be more daring in trying new foods. I am still surprised at some of the meals she eats with her friends that she will not try at home yet.
Unfortunately, financial constraints have prevented us from seeing Andrea and her team again, but 18 months later they are always in contact and offering us guidance when we need it.
Now three, our Charlotte weighs 10kg. She has always been slow to gain weight, but she is so much more than a number on a scale. She is in the 25th percentile for height, which indicates that she is growing. She is smart, witty, outgoing, charismatic, loving and just amazing! She loves interaction and spending time with her friends at school and she seems to be developing a love of singing, using anything at her disposal to play the drums, sing a song into her makeshift microphone or dance like nobody is watching.
She is a whiz at memory games and puzzles, and has a weak spot for horses and dinosaurs. Charlotte shares her food with her favourite stuffed animals, tucks her dogs in under blankies on cold days and loves to skip and dance instead of walk. She is our inspiration and reason for breathing. Developmentally, she is exactly where she is expected to be as a healthy three-year-old. She still has minor issues with muscle tone that we work on, but we are blessed that she is an otherwise a happy, healthy, inspirational little girl that who has proven that miracles do happen!
My message to any parents who may encounter similar issues when it comes to feeding their child is to trust their instincts. Our fears and concerns were more often than not brushed aside; we were often made to feel paranoid and that our concerns weren’t valid or real. I was accused of being a negligent and abusive mother – among other horrible accusations.
As a parent there is nothing worse than feeling utterly incapable of helping your child. Remember, this is not your fault. You did not cause this and there is help out there. Fight for yourself and your child until someone hears you and helps you!
Written by Charlotte’s mother, Karin Anker. Images supplied. Read more about the story of raising Charlotte, a miracle micro prem, on raisingcharlotte.co.za.