MAY 2016 - Mum of two Sam Draper tells us her story about her second daughter Mighty Willow who was born at 25weeks plus 4days.
Please tell us a little bit about your family and what brought you to live and raise your family in Dubai.
I came to teach in Dubai nearly ten years ago because my sister lived here already and I met my husband Phil in my second year. We have made many great friends and apart from the hot summers, love the dependable sunny weather. My two daughters play with their cousins every week and having family here has made it feel more like home.
How early was you baby and what challenges did you face during those first few weeks and months?
My daughter Willow was born at 25 weeks and 4 days. Although I knew there was a risk she would come early you can never prepare for what lies in store for you emotionally. I never expected to hear a cry when she was born but I did and it gave me the hope I needed that there could be a chance she might survive. Seeing her for the first time in the incubator was strange – she looked more like a baby bird and I was mesmerised watching her chest go up and down and making sense of the machines and wires keeping her alive. Willow’s first few days in NICU were stable, she had a small brain bleed and a bout of jaundice so needed to sunbathe under the UV light but I remember continuing to feel positive. I had to quickly find a routine to fit around my then 2 year old daughter so I could be at the hospital as much as possible yet make life feel as normal as it could be for her. The amount of time spent in the car travelling back and forth to the hospital was tiring but I felt compelled to be beside Willows incubator as much as possible. Luckily, I had many great friends who were willing to babysit so my husband and I could visit together in the evenings. It was into Willows second week that she started to show signs of distress. The doctors were concerned that a particular heart valve that should have closed had remained opened causing sleep apnea. Then acid reflux started when milk feeds were introduced which meant Willow stopped breathing which was scary, especially when you see the nurses rush to help get things back on track and the machines are bleeping away. When Willow was a month old one of Willows lungs had collapsed and she showed signs of infection which ended up being Necrotizing Enterocolitis (NEC), a serious problem that develops when a section of the intestines becomes weakened and damaged then ruptures which is what happened to Willow. She was taken into surgery with a 50/50 chance of survival and I found the time leading up to this excruciating. This was definitely a time when I needed my family and friends around me to calm me down when the tears wouldn’t stop and helping me to stay postive. The anaesthetist sent me a text during the surgery to let me know they were closing up and that she was going to be ok and I felt so relieved! They had to cut away most of her lower intestine and clear out all the feaces that was inside her tummy from the rupture but had managed to sew her intestines back together without the need of the equivalent of a colostomy bag. After that experience I felt really nervous each time Willow took another step back with various other infections and more surgery to save her eyesight due to ROP (Retinopathy of Prematurity). Willow’s progress was slow and the day she moved into the ‘sunny’ room in City Hospital brought such joy as I could pick her up when I wanted and start taking over the role of Mummy. Breastfeeding Willow started out great but because my eldest daughter was ill and I had to stay at home more I wasn’t able to be at the hospital regularly enough to beat her preference to the bottle but I was determined to give her breastmilk so breast pumped for 14 months, which was a full time job in itself! When we got home new challenges arose as she wasn’t growing very fast and the high calorie top up formulas didn’t agree with her digestive system causing Willow to cry all the time, refuse to feed up to 24 hours and even cause blood in her stools. After a lot of second opinions and trials of different formulas, one doctor though it might be due to milk protein intolerance and put her on Neocate which she could finally tolerate. We also regularly saw a chiropractor who calmed Willow down from her very first treatment after finding lots of muscle tension in different places which could have been causing extra pain and discomfort.
If a new mother to a premature baby was reading this, what advice would you give them?
I would advise any mother to lean on their friends and family for support and comfort. I started a facebook page with pictures and updates as I was getting a lot of texts asking how we were all doing but it ended up being a great comfort as it was like writing a journal and reading everyone’s words of encouragement kept me strong throughout all the ups and downs. My husband and I found a way to allow me to stay at home for the last two years which has been a huge relief to spend the time bonding with Willow, keep up with doctors appointments and be home during the weeks it takes her to recover from her recurring bouts of bronchitis. Talking with people who had similar experiences made me feel more normal and less like I was the only one worrying about everything. I also read lots of books. For me it was comforting to know what was going on without having to ask the doctors all the time and it empowered me and made me feel more in control.
Has having a premature baby changed you, your family or perhaps your outlook of life?
Having a premature baby has most definitely changed me! I am much more neurotic about cleanliness, even now when Willow is 17 months old (15 ½ months corrected) she gets colds very easily which always end up in her chest with bronchitis and when I’m out and about in quiet places I am finely tuned to people who are sniffling, coughing or looking ill! Sometimes I think I spend my whole time worrying about what obstacles she will face and what I can be doing now to put the right foundations in. I do feel incredibly lucky that Willow has managed to pull through but at the same time the whole situation still feels surreal, like I still can’t believe I went through all that. Trying to juggle life at home with my eldest daughter, going to hospital in addition to keeping up with cooking and housework made me very grumpy, tired and weepy and led to many an argument with my husband. It was hard on my Mum and Dad because they live in America and they couldn’t come over until a couple of months after I’d given birth and there were many teary Skype calls.
Is there anything you would like to see happen or be highlighted in Dubai regarding prematurity of babies?
I feel that there needs to be more awareness, support and advice for families in terms of medical cover. If you have a premature baby, especially a micro-preemie, it can cost over a million dirhams and fortunately for us my husbands company were able to amend their medical insurance for us but I have since heard of so many couples being in a similar position without a way out and the last thing you want is to be worrying about money and how much it will cost to save your babies life. Having a network of doctors names and numbers who have experience of working with premature babies within various fields as well as alternative therapies available i.e. chiropractic support, cranial massage, peadiatric allergy doctors, gastro doctors could save lots of precious time researching. Having a support buddy may also suit some Mums …I was put in contact with a Mummy who had been through a similar experience not long before I had Willow and even though I met her only a couple of times, her texts and our meetings meant a lot as I was able to ask questions and get advice from someone who had been there and can relate to all your worries.