Tube Weaning Testimonials
I want to share our story as I am just absolutely amazed at what this program can do! Our daughter was born with oesophageal atresia and therefore unable to swallow. On her second day of life she had a g-tube placed and was fed through this until her surgery to fix the oesophageal atresia at 1 month of age. Unfortunately there was still a leak in her oesophagus and so she was unable to even attempt to drink anything orally until she was 8 weeks old when she was allowed 5ml each feed. By the time we were discharged from the NICU at 10 weeks, our daughter was allowed 20ml to drink each feed and the remainder was put through her g-tube. By the time she was 12 weeks old she was vomiting so much that she started refusing the small amounts she was allowed to drink and so from 12 weeks she was completely non-oral. She would not even touch a bottle.Over the next few months we were told to forget the bottle as she would never take it and we would need to focus on sippy cups and solids if we wanted any chance of getting off the tube. I was recommended Rowena’s book by a friend and read it that night. I started implementing the rules as best I could with no pressure offers. After 5 dilatations of our daughters oesophagus we were told there was no physiological reason she could not drink now, however because she wasn’t drinking anything our hospital could not offer a tube wean. My husband and I decided it was time to book a consult with Lindsay. We had heard so many positive stories on the BCA Facebook support page about how amazing she was. Well they were right. Lindsay is AMAZIng! So supportive and giving so much of her time to answer questions, give feedback on my MANY videos and even lend an ear during my emotional times. It turns out we have a particularly stubborn and independent little girl and after 7 days of tube weaning she showed very little progress, and it was emotionally very difficult. She would barely touch the bottle and only occasionally allow it into her mouth. We decided to stop the tube wean and do a second attempt a month later. Lindsay left us with a plan and I continued to offer the bottle, ensuring I was still following the rules. Two weeks after stopping the tube wean our daughter grabbed the bottle from my hands and started to rub it over her two teeth. A week after this when I offered an evening bottle before I tube fed her, she suckled the bottle and drunk 15ml. I was in awe. I did not expect this. On the following day she drank 350ml. The next she drank 270ml and on the 4th day after that little suckle, she drank more from a bottle than I had ever tube fed her. I now can’t make her bottle fast enough because her little hands are trying to grab it from me while I’m making it! Our little girl just needed the time to realise that the bottle was ok. It wasn’t scary, nobody was going to pressure her. It was all up to her. We couldn’t have got to this point without Lindsay and we are eternally grateful to her for her help in getting here.’ Thank you for everything once again.
We really have no words & thank you will never be enough for the time, effort & encouragement Lindsay put in to our tube weaning program.My son was literally born unable to swallow, his stomach & esophagus were not connected. Instead they were two separate closed ends. J spent the first three months of his life in hospital & underwent 4 pretty major surgeries all in which he was intubated for. He had numerous traumatic experiences whilst in hospital & came home from hospital with a feeding aversion. For good reason. J feared the bottle & refused the breast. He had severe reflux following surgery to connect the two ends of his esophagus and stomach and would vomit frequently. We were pushed to increase his feeds even though he wasn’t coping just to hit the ‘volume’ that most babies his age would be on.Finally, at our wits ends with J’s g tube we began to do our research & that is when we came across Baby Care Advice and Lindsay. We booked a consult right away. Lindsay was so thorough & articulated every aspect of the tube weaning process so well. J had massive improvement after the first week of the program, but he was not taking enough orally to continue long term. We were reassured by Lindsay that he absolutely has the capability to feed orally & to have another go in a month or so, the break would do him good.Fast forward 2 months and with the support of Lindsay, after 4 days J was completely oral feeding!! No tube feeds, no tube top ups! Just purely bottle fed. We didn’t even know J’s stomach could tolerate the amount of milk he was drinking at a time, 230mls before we put him down to bed and anywhere from 750ml-950ml over the course of the day.We are in disbelief at how well J is doing, there has been the best of days & some really rough days. It is so stressful when your baby does not drink & easy to pressure them, we know this first hand but we were very strict with sticking to the program & we actually still follow the golden rules with most feeds. J is healthy, happy & has the cutest chubby cheeks in the world. We will honestly never be able to thank Lindsay enough.If you are questioning whether or not to book a consult, do it! It is worth every cent.
Rhi & Danni
I told my husband when we started the tube weaning program that if the program worked, I would shout it from the rooftops. So here I am shouting from the rooftops!! THIS PROGRAM IS AMAZING!!! Lindsay Wark and the tube weaning program gave us a new baby, gave us our lives back, and kept our little guy from a G-tube. I am eternally grateful!!
Here is our story. My son who was full-term with no medical problems was never the very best eater. His growth was slow, and he was falling more and more off the growth chart. Per our GI doctor I started having to pump, and adding extra calories to his milk with formula. GI and speech pathology told us he was very uncoordinated at the bottle. They put him on a specialty bottle, and told me to swaddle him and use chin support to help him eat better (which now I can see how this was a subtle form of pressure!). Our son kept getting worse, more uncomfortable, and eating less. And finally got to a point where we were having to feed him a lot while he was sleeping to try and get it enough milk in him (which is very common with aversion). The G.I. doctor had been talking for a little while about potentially putting in an NG tube, which I was resistant about, but after a while of him drinking less and less and starting to lose weight (and he was already under 1st percentile), I caved and agreed to the NG tube. After getting the NG tube my son pretty much stopped taking any milk by mouth (except when asleep). He would take 0.5 ounces at the most, but usually would just outright refuse or take a few sips. We were so discouraged! We were hoping the NG tube would help him grow, and help him get used to having more volume, and that he would “just grow out of it and start eating” (as we were told would happen eventually). The NG tube made me upset all the time. Not only was I so discouraged that he wasn’t drinking by mouth, but he pulled his tube out all the time and having to insert the tube and do dressing changes were so traumatic for all of us. I just hated it!!
I ended up ordering Rowena’s book (as recommended by my step sister who implemented the book with great success in her son), and as I read it, I was continually amazed at how our son’s behavior was exactly what was described in the book. The part of the book where she describes the common progression of aversion in babies and how you get sent to various doctors and get certain diagnoses was so incredibly similar to what we went through. I started to feel some hope that maybe her son really did just have an aversion and wasn’t unable to eat (or wasn’t coordinated enough at sucking). After doing some of our own research, and seeing how allowing hunger is the best way to get babies off of feeding tubes, we decided to go ahead and book a consultation with Lindsay.
I cannot say enough positive things about Lindsay and the tube weaning program! Lindsay was knowledgeable, thorough in all her responses, and so very kind as well. She spent a ton of time with us on the initial consultation via facetime, and answered my millions of questions via email in such a helpful, kind, and thorough way. If it weren’t for her, we probably would’ve given up on day three. I can’t lie, the first 3-4 days of the program were hard. But then by day 4-5 his behavior around the bottle really started improving, and by day 7 or so his intake had improved as well. We were gifted a new baby!! Before the NG tube, we would be fighting with our son for close to an hour trying to get him to drink, then after the NG tube, we ended up having to put almost all his formula through the tube. Now our son drinks a bottle in 10-15 minutes! He now has no NG tube and is back to growing very well! We were on our way to a G-tube within another month or so if we had not done this program. GI, speech pathology, and occupational therapy could not fix our son, but this program did. Lindsay, thank you from the bottom of our hearts!
Jackson’s story is a long one despite him only being 8 months. I’ll give the details here because reading other people’s journeys-especially, the ones with significant medical interventions are what helped me decide to book the consult. By the time we found Lindsay, Jackson had seen 21 medical professionals, none of whom were able to give us any solid answers as to why he would not eat by mouth. He had been in feeding therapy for 5 months and we had tried every bottle on the market and every technique shown to us with absolutely no progress. Jackson has had multiple scopes, a FEES test, echocardiogram, swallow studies, a gastric emptying study, ultrasounds of his stomach, many x-rays of his abdomen, upper GI series, laryngoscopy, esophagogastroduodenoscopy, biopsies of his GI tract, brain MRI, many labs and probably other things that I’m leaving out.
Needless to say, it’s been a long difficult journey for him and us! He was born at term but small at 5 lbs 14 oz. He was labeled small for gestational age and I believe that diagnosis is where all of our problems began. He was 100% breastfed originally and things went well for about 3 weeks. During the 4th week of his life everything fell apart. He started refusing the breast so we switched to bottles. The volumes he would take by bottle continued to decrease to the point where he would only consume about 10 oz in a 24 hour period total and that was with me trying what felt like every second of every day to get him to eat. This is where we entered the ‘medical maze’. He was trialed on different medications for reflux and when those didn’t work the dosage just kept increasing. Despite eating well for those 3 weeks, I was told by what felt like everyone and their grandmother, including his doctors, that he was too small and not following the “curve”. This is where the pressure to get him to eat started and that became my whole life-just trying to get Jackson to eat more. Food allergies were suspected so I started on an elimination diet where it I only ate chicken and rice for breakfast, lunch and dinner to try to eliminate allergens from my breast milk so that he would be more comfortable with eating. This didn’t work so we started on hypoallergenic formulas that also failed to show improvement. He developed hernias that needed to be surgically repaired when he was 3 months old. After these surgeries I refused to leave the hospital until we were seen by a feeding therapist. After her evaluation Jackson had a NG tube placed and I remember feeling relieved to have it because at least now he could get food. He was labeled failure to thrive during this hospital visit and we ended up staying 10 nights while many of the before mentioned tests, studies and procedures were conducted to attempt to identify the cause of his feeding issues. Nothing yielded results so we were eventually sent home with the tube. Fast forward a month with no improvement in oral feeds or temperament and he then had a G tube placed during which time he also had an “exploratory” surgery to once again attempt to identify the cause of his issues. Once again everything came back normal. I remember feeling disappointed that everything was normal because this meant there was no solution to our struggle-what kind of mom wishes that doctors would find something wrong with their child! I was so desperate for answers and a solution that I didn’t know what to do. I knew the G tube was just a band-aid and wasn’t fixing our actual problem. We continued to get second, third, fourth and fifth opinions from ENT, GI, pulmonology, feeding therapists, nutritionists, speech pathologists, occupational therapists, physical therapists, surgeons, early interventionists, dentists, allergists, chiropractors, Craniosacral therapists, you name it, we have probably seen them. With each specialist came more medications. He was eventually diagnosed with severe GERD, visceral hypersensitivity and esophageal spasms. I set alarms on my phone to remind me when to administer his feeds and medicines-it felt like my alarm was constantly going off even into late hours at night. For a few weeks we had at least one appointment and usually multiple every day. We weren’t able to enjoy Jackson and he was never allowed to just be a baby!
As you can imagine, we all were at our wits end. Thankfully, we finally found Rowena’s site. I ordered her book, stayed up and read it through in one night and booked the consultation with Lindsay as soon as possible. She was amazing and supported me every step of the way. Once beginning the program Jackson began to make progress almost immediately and was no longer tube fed AT ALL after just 7 days! He now happily consumes 20-24 oz of fortified formula every day and we are looking forward to weaning him off of his medications and beginning solids soon! I cannot recommend Baby Care Advice enough.
We opted out for working with Rowena via Skype consultations as we live in USA. Her knowledge and guidance completely transformed our lifes. We had a tube fed baby, not thriving and refusing anything orally and soon to have G button surgery. Thanks to Rowena we avoided the G button surgery, weaned off tube feedings and by now have a completely healthy child. It has taken hard work, time and our dedication but without Roweena we'd have not gone this far! Thank you Rowena for all your help and helping us have a healthy eating child!
We were in a really bad place when we found Rowena. My son had open heart surgery when he was 6 days old, and due to complications with his airway, he struggled to feed afterwards. He was fed via NG tube and the local team told us he would start taking more as he got bigger. Of course we believed them, but over the next few months, he took less and less, eventually refusing to put the bottle in his mouth, and it developed into severe oral aversion. We attempted a rapid wean at 5 months, but it failed, and my son was hospitalised and came home with a feeding pump and on a 20 hours per day regime. In time, a PEG was placed. But he was vomiting round the clock and life with the tube was pure misery. He wasn't growing, wasn't gaining weight, and the NHS were pressuring us into allowing him to have a Nissen's fundoplication, or a jejunal tube placed. We were in a really dark place. Through a friend of a friend, I found Rowena. We were at rock bottom and had one attempt left at weaning our son before we would give in to the NHS. I found Rowena to be very thorough in her questions and in the initial consultation, and she made us no false promises and explained that whilst he sounded like a difficult case, she did believe that it would be possible to wean him. With the NHS pressuring us and time not on our side, we began Rowena's programme without telling them. In our heart of hearts, we wanted to believe Rowena's ideas could work but we just didn't think it would. But we gave it one last shot. Within a week of working with Rowena, our son stopped vomiting. And within a month, he put food in his mouth for the very first time! It felt like no-one in the world could help our son except Rowena! It has taken us 10 months to wean our son from the tube fully, and without Rowena, I truly believe he would still be tube fed and we probably would have accepted the Nissen's. Rowena's support has been amazing in so many ways. Here are some of them:
- She gave us no false hope but gently believed that he could be weaned
- Throughout the wean, at points when I was in really dark places, Rowena would always email me in a sympathetic but pro-active manner, i.e. she understood why it was so emotional for me but that I had to pull myself together!
- She is so dedicated to her clients, that she emailed us from her hospital bed (after a fall) once when I needed help!
- Further down the line when we had pressure from the NHS to go back to full tube feeds because of his lack of height gain, Rowena wrote a report for us and gave us all the tools we needed and questions to ask to challenge the doctors with confidence (which meant we went away from that appointment standing our ground)
- She helped me to realise that a rapid wean didn't work for all children and that I shouldn't feel like a failure because it didn't work for us.
Jennifer - London
We contacted Rowena about our 2 month old daughter when we were at our breaking point… Since birth, our daughter Hadley had failed to stay on the growth trajectory that doctors wanted her on. She ate less than their recommended amounts and fussed violently when we tried to make her eat more than she wanted. Because of her dropping in growth percentiles, we were referred by our pediatrician to see teams of specialists. Here is the history: Birth – 8 lb 15 oz. No complications or physical problems. 2 weeks – She was back at her birth weight, but not easting more than 1-2 ounces per feeding (Breatfed). We were referred to GI specialist. In the meantime, we started offering bottles every 30-60 minutes to our baby per doctors recommendations. She ate more, but often while screaming/crying. 2-4 weeks – The GI specialist diagnosed Hadley with Reflux. We went on 3-4 different reflux meds, increasing in potency every time. We continued offering food 20-40 times/day, often times making Hadley more angry. No improvement in eating behavior and gaining weight very, very slowly. 3 weeks – Hospitalized for a night per the GI specialist recommendation. They studied her eating behavior. Thought perhaps Hadley was allergic to mother’s milk and switched to Hypo Allergenic Formula (Elecare). 4-5 weeks – Referred to various feeding teams who studied Hadley. They found nothing wrong and said to continue meds and Hadley may “grow out of it”. 5 weeks – Hospitalized again due to fear of dehydration. We stayed at the hospital for 4 nights. Hadley continued to scream when being fed. A feeding tube was inserted to help her get the recommended ounces. 6 weeks - Had a tongue & lip tie procedure done on Hadley. A new doctor we saw thought this was leading to swallowing/eating problems and poor weight gain. 5-7 weeks – Put through awful set of stretching exercises after the tongue & lip tie procedure. Also continuing to give Hadley 3-5 medicines per day, all orally. Hadley developed such a fear of things going near her mouth that she screamed violently even when seeing the bottle or being put in a feeding position. 8 weeks – Contacted Rowena. She diagnosed her with a behavioral feeding aversion and put us on a plan to re-condition Hadley. 8-9 weeks (during Rowena’s plan) – The plan is a HUGE leap of faith…and we were skeptical. Her intake dropped very low for the first couple days…and we panicked. However by day 3-4, Hadley was starting to accept more and more food. By the end of week 1 she was taking in close to the required amount and gaining 1 oz/day. By the end of week 2, we were so confident in her eating that we started working on her sleeping problems. Today: She is 3 months old and a COMPLETELY new baby. Eating, Happy, Sleeping Well! We dropped every medication she was on, threw out the feeding tubes, and stopped pressuring her to eat! Rowena was an absolute gift from God!
Jared - New York, USA
We are so very thankful we found Rowena. Our daughter was born at 28 weeks and we had spent 10 months with an NG tube and doctors pressing us to move to a gtube. I knew in my heart my daughter could eat if just given a chance. I had spent tons of time researching options and we had hours and hours of speech therapy with little to no progress. I didn't know if Rowena could help but I knew it was worth a try.
Jennifer - Texas, USA
My daughter Emily was born with Bilateral Paralyzed vocal cords. At three weeks old my husband and I received the news from all her doctors that she would require a tracheotomy to help her breath and allow her to be a baby. We were scared and terrified as any new parents would be. A few weeks later she also was required to have g tube. She had severe acid reflux and with her tracheotomy doctors informed us the g tube would be best for her to give her food and nutrition. I continued to work with Occupational therapy and the doctors from our hospital to get her to drink a bottle. Then she turned 6 months and it was time for solids they gave us the ok to proceed with giving her solids but she never really ate enough. Her first birthday had arrived and she was doing amazing. In her first year she hit all the developmental mile stones, she was crawling and almost walked with her twin sister on her first birthday. But there was one thing missing, her eating. Although she was eating she still required to have boluses through her g tube every day. I tried everything and continued to meet with doctors and occupational therapy. It was a consistent battle and she was not gaining weight. Doctors told me I should wait till she is the right weight before doing any g tube weaning. They informed me Emily is a picky eater and I should continue to try all foods. But as a mother I felt in my gut she deserved a chance to wean her off the g tube. Then Rowena my saving grace came into the picture. I spoke with Rowena and instantly knew I was in the right hands. We started right out of the gates cut her feedings in half!! And I said in half?! She said yes, it will be ok and so I did. Within in 1 week Emily was eating everything I placed on her tray. So we continued week by week. After three weeks Emily was eating and drinking 100% orally. The boluses were over and out of our lives. Within 3 months Emily’s weight had jumped from 15.4 to 19 pounds!! She eats more than her twin sister and still has a tracheotomy. I can never thank Rowena enough for all her support and changing our lives. Rowena was so helpful, encouraging and available to any questions I needed. We spent our first vacation as a family not tied to boluses or night time feedings and it was the best vacation ever! Thank you for every thing Rowena!
Amy - USA
We used Rowena to help solve a bottle-feeding aversion and tube weaning with our daughter Maddie. I found babycareadvice.com on Google after having several failures working with local doctors and feeding specialists. Rowena was a delight to work with and gave easy to understand instructions on how to solve the feeding aversion first. It was a matter of my wife and I understanding and applying the “No-Pressure” method that Rowena teaches. After solving the feeding aversion, tube weaning began and within days we were able to remove Maddie’s NG- tube. It seemed to us a miracle. But, Rowena’s methods really do work if you follow them as described. I would recommend Rowena to anyone with a child that has feeding difficulties.
Chris - USA
If it wasn't for Rowena our daughter would probably still be tube-fed. Without exaggeration hiring Rowena Bennett changed the course of our daughter's recovery from an open-heart surgery. Our daughter had open-heart surgery at the age of eight months and unexpectedly spent 45 days in the hospital recovering. She was intubated with a breathing tube for 23 days and had a feeding tube inserted a couple of weeks after surgery. She seemed to have lost her feeding ability during her lengthy recovery. Almost exclusively breastfed before surgery she lost all interest in the breast and was unwilling and unable to latch on. She started taking a bottle sporadically while at the hospital and with the feeding tube still inserted. We were hoping that after discharge in the comfort of home and loving family and away from the horrors of the hospital she would just increase her bottle-feeding and her feeding would get back to normal. Alas we couldn't have been more wrong. She kept taking less and less from the bottle and with every passing day was getting more and more dependent on the feeding tube. Pretty much everyone from gastroenterologist to cardiologist to intensivist from the hospital to nurses and speech therapists were telling us that the nasal tube had to be replaced with a PEG tube that had to be surgically inserted through the stomach wall while our daughter relearned how to eat. Everyone seemed to have different theories about why she was not feeding orally. The gastroenterologist thought she forgot how to eat which was totally ridiculous because she DID eat while in the hospital and for a little while after we brought her home. The hospital speech therapist thought she had lost her sucking and swallowing abilities. Also not true. Hospital nurses thought she had a feeding aversion after having so many painful procedures done through her mouth breathing tube insertion and reinsertion endless suctioning of fluid during the 23 days of intubation feeding tube insertion and repositioning. This made sense but nobody offered a solution about reversing this aversion. The plan was to replace the nasal tube with a PEG tube and feed her through the tube while working with a speech therapist on her eating skills. In the meantime speech therapy was totally useless very slow and tentative "try a different bottle for a week then a sippy cup for another week. Let's try adjusting the tube feeding schedule for a week...". We were getting TOTALLY desperate and were leaning towards considering a PEG tube because life with a nasal tube was a nightmare. Our daughter pulled it out several times and had to be taken to the ER for reinsertion. To prevent this from happening we had her in mittens during the day and tightly swaddled at night and during naps neither of which was helping her physical recovery from the surgery nor was it developmentally appropriate for a 10-month-old baby. We lived under a constant threat of the tube being pulled out. Needless to say we couldn't take our daughter anywhere and were bound to the feeding pump. This was on top of the exhaustion of adjusting to post-surgery life with scheduled medications medication weaning, endless doctor and therapy visits trying to restore her physical, and cognitive abilities and reestablish sleep patterns... During his many days taken off work to take care of our daughter my husband found Rowena Bennett's "baby-care advice" website while looking for information about tube weaning. Most of what we read on Rowena's website about babies' refusal to eat made sense to us and we decided to book a consultation. Without exaggeration this truly was a life-altering decision for us. If we hadn't sought Rowena's help our daughter would probably still have a feeding tube now almost six months after surgery, and have a PEG tube at this point I am sure. Rowena devised a very precise feeding plan for our daughter. She gave us very specific instructions about how to attempt the feeding what to do and what not to do and when to stop offering the bottle during each feed. We would have NEVER dared to do this on our own not with a post-surgery baby who was already below the 1st percentile for weight. She still had the feeding tube inserted when we started working with Rowena. Progress was slow and very tentative at first. It was SO difficult not to get disappointed on days when our daughter didn't take much formula orally. But we stuck with it and continued following Rowena's recommendations. Two weeks into the weaning process our daughter has pulled out her feeding tube again and we haven't reinserted it. We didn't need to. By then she was eating enough orally to maintain her weight. She's been tube-free for over THREE MONTHS now and I think it's safe to say that her feeding aversion has been resolved. While she is still underweight for her age, she's eating fairly well and gaining weight steadily. We are SO lucky to have found Rowena.
Maria - USA
We started Layla on the bottle at 6 weeks, all was progressing well and we were asked to keep records of her daily intake to show increased volumes which we did until Layla got a sore throat and cold, unfortunately because we were focused on increasing volume all we saw when she got sick was decreased volumes and panic set in. We started holding the bottle in her mouth, days turned into weeks of fussing, crying and complete refusal to eat. Two hospital stays, numerous gps, a speech pathologist, and two paediatricians, one of whom started her on reflux meds, but she would only feed asleep, and eventually she stopped sucking the bottle even asleep! We signed up for a week long stay in a sleep and feeding clinic and that too provided no answers. Another hospital visit labelled her as failure to thrive and feeding aversive, we stayed for another week in hospital where it was recommended she have an ng tube inserted. Relief was profound on our part, at least she was being fed. We were sent home. Weeks turned into months and we had no plan or help from anyone for future tube weaning. What to do now? Long term tube use scared me and I worried about speech, her losing the feeling of hunger and satiety. Scrolling through the internet I found Rowena's website. As with many of the other testimonials Layla fit the profile of feeding aversive perfectly, as we already knew, but what to do now? We had our initial consultation and our confidence grew after Rowena told us she could help. More relief, someone was in our side, I knew I would need constant guidance throughout this process so we signed up for the support package as well. Thank goodness, I would never have made it without the constant emails and support throughout the process. Amazingly Layla progressed well, until she decided to cut a tooth right in the middle of it! She passed this hurdle and we can now say we are tube free and feeding from the bottle happily! I can't believe it and neither can family and friends. I would recommend babycareadvice to anyone who has any baby issues and can't thank Rowena enough for restoring sanity and happiness in our life!
Amanda - Gold Coast,AU
Baby Will started to have issues since 3 weeks old. He would cry during his feeds. He could only eat 2 ounces or less and it would take forever to feed him. Doctors thought it was silent reflux and put Will on medication which did not seem to help. At that point, we could still feed Will, even though it would takes ages and he would often cry. Since things started getting progressively worse. He had to see a GI specialist and have his meds changed and adjusted multiple times. We tried every bottle and formula on the market with no improvement. I had to cut dairy and other major culprits out of my diet (for breast milk) and that did not help either. By 3.5 months he was close to impossible to feed. I had to carry him and power walk around the house while singing to him and rocking. This was beginning to fail as well. At his check up doctor saw that Will has been losing weight and classified him as failure to thrive and sent us to the hospital. There Will continued fighting his feeds and losing weight. They did all sorts of tests including endoscopy and did not find anything wrong with him. They ended up putting Will on an NG tube which proved to be a nightmare. Will started throwing up his whole bottles after each tube-feed and stopped eating by mouth completely. We took him to 3 ENT specialists, therapy, speech pathologist, 4 GI doctors and all we could get out of this was a tube that was not working, complete refusal of foods by mouth and advice to just push through until this self resolves at a later age. Finally, Will's 4th GI doctor took the tube out and gave us a week to see if he will start eating on his own. We were given specific amounts of formula he had to consume a day and were told to start getting mentally ready for a g tube. Will did start eating again but only when walked/rocked/sang to him. This didn't last long though. Soon, he started fighting even feed and would cry and gag so violently he would bring up his entire feed. In desperate attempt to save a seemingly healthy baby from a g-tube, we resorted to sleep feeding. We had to be stuck at home working around Will's naps so we could feed him. He would fall sleep, we would snatch him from his bed and start feeding him. Sometimes he would wake up and start crying and we would need to calm him down, wait for him to fall back asleep to start again. In order to get proper amount of ounces a day, we had to wake up at midnight and 4am to sleep feed him. We were desperate and did not know who to turn to since he was already in feeding therapy and has had every possible test done and seen by every possible doctor. Finally, I found Rowena while searching the internet for feeding aversions. First, I read her article on feeding aversions and everything made such perfect sense. Out of all the scenarios all the doctors went through, no one ever considered the behavioral aspect! Then, I turned to testimonials and that is when it really hit home. I was crying reading them because we could relate and I was amazed at how many people have dealt with this issue and found solution with Rowena. I immediately sent a consultation request to Rowena and she followed up with a detailed questionnaire to get a good understanding of Will's situation. No one every asked us so much detail in all our doctor visits. I felt like finally someone cared and listened and really wanted to get to the bottom of it.
Olivia - USA
We had been having extensive feeding difficulties with our second daughter from the age of about 10 weeks through until just recently when she was seven and a half months old. From that early stage she had become very difficult to feed and refused to drink from breast or bottle - every feed was a battle. We had been to numerous medical professionals, even had a two week hospital stay but, despite batteries of tests (all of which proved that she was normal and healthy), no-one was able to explain why she was doing what she was doing. The ultimate diagnosis was to fit her with a naso-gastric tube to ensure that we could always fill her up to the prescribed amount for a child of her age. The suggestion was that we should do this until she was through weaning - as "in all likelihood" she would wean totally normally and this would all just become a bad memory. We managed life like this for over 5 months and it was miserable and stressful, most of all for our daughter. As she started to behave similarly with solids, we decided that we had to seek second opinions. When we found Rowena's web page describing feeding aversion behaviour, it was the first time that we felt as though somebody was describing what was taking place with our daughter. It was almost word for word what she was going through. Rowena's solution was practical, logical and well explained. Anything about which we had a question, she readily took and answered until we were totally clear on how and when we were going to execute the plan. We knew that it might be a difficult few days as we went through the transition but we were surprised with the speed that our daughter removed her psychological aversion and learnt to be hungry and feed normally again. Here we are, ten days later, and we have a "normal" baby of eight months old who cries when she is hungry and looks excitedly to drink milk from a bottle and who enjoys her solid weaning diet. It is a remarkable transformation. Whilst we are still slightly nervous at every feed given that it is early days, it is remarkable what it has done to stress levels in our house as well. I would recommend Rowena and her service very highly - she has wrought some magic that has made a huge difference to all of our lives.
Andrew - London, UK
Joseph was born at full term but with congenital heart disease. From the first day he was born a feeding tube was inserted in his nose, to ensure he got maximum amount of calories to prepare him for his open heart surgery. Also due to his heart condition he found feeding tiring and although would start enthusiastically he would run out of steam after only about a third of a bottle on average. Due to complications arising from his heart condition, Joseph had a prolonged stay in intensive care and was ventilated for 5 weeks. In total he spent nearly 4 1/2 months in hospital had 3 operations, 2 of which were open heart surgery. After Joseph left intensive care he had to learn how to feed again. He slowly picked this up and by the time we finally left hospital he was able to take 10-20mls milk in a bottle and the rest was put down his feeding tube. Over the next 3 weeks we worked on Joseph's feeding and he progressed well and was taking up to 45mls in a bottle. Then one day he started to get upset when we offered him the bottle and he started to refuse to feed from the bottle completely. It got to a point where we could only get him to take the bottle if he was asleep, and we could also only tube feed him asleep as he would quite often be sick if he was tube fed awake. Joseph was taking all his milk asleep and our routine was getting crazier and crazier. We would have to rock him to sleep to feed him, sometimes he would wake up with the bottle in his mouth and get very distressed and because of all this I only liked to feed him at home and it meant we could only leave the house for a couple of hours at a time. Our local hospital nurses and speech therapists were not overly helpful. We were told to persevere with baby rice and sleep feeds and he would eventually take enough not to need tube top ups, although there was talk about a possible operation to have a tube out in his tummy if he didn't. I was randomly googling oral aversion one day not really looking for anything but having convinced myself this might be Joseph's issue I wanted to read some definitions on it. It was then I discovered an article written by Rowena on feeding aversion. I was in tears by the end of the article as it sounded so similar to what we were going through with Joseph. I then realised Rowena did some consultancy work and thought what had we got to lose by contacting her. Rowena was very quick coming back to me when I contacted her, she sent us a detailed questionnaire to fill in and then we had a skype consultation where she said she felt she could help Joseph and outlined her plan to us. We decided to implements the plan a few days later and also asked if we could use Rowena's follow up service as I was feeling nervous and wanted the extra support. Amazingly the first day we implemented the plan Joseph started taking the bottle and from that day on we have not had to give him any tube top ups. By day 5 he was taking enough calories to not need the tube again. He now cries for food at night which he has never done and gets very excited when he sees the bottle during the day. He could probably be taking slightly more milk but I think this will come, more importantly he is happy, looks well and enjoys feeding which I could not believe was possible when we started this process. We cannot thank Rowena enough as she really has changed our life!
Gemma - USA
Ryan had been a good baby until 3 weeks after birth. He started to scream with each feed as though he was in some sort of pain. This went on for a while until he stopped drinking from the bottle altogether. He was vomiting most of what he would take too. The paediatrician we saw decided to insert the NG tube in him to sustain and keep his weight up until the cause of Ryan's issue was resolved. We had a few months of tube feeding until I saw a change in Ryan. He wasn’t screaming during his tube feeds anymore. He wasn’t vomiting his feeds anymore. He wasn’t irritable and cranky as he had been the last few months. It appeared that the issue that had first appeared and bothered Ryan so much had disappeared. It was time to remove the tube. I tried for a week or so to get Ryan to drink from the bottle. He screamed at the sight of it. He had built up so much fear of the bottle he now had a phobia. One night, in my angst I came across Rowena's website. This sounds too good to be true I thought. I spoke to my husband the following day and we decided to give Rowena a try. Anything was worth a shot. Even if Rowena was on the other side of the world and there was a huge time difference. If it meant my baby was going to be better then it was worth it. After speaking with Rowena, we implemented her plan the following day. Unfortunately after a couple of days Ryan became ill with a cold and we scraped the plan. A couple of weeks later, when Ryan was completely better, we implemented the plan again. Ryan started to take the bottle within a couple of days. It was tough but after a week Ryan was drinking every feed via a bottle and the tube had become redundant. We have our baby back and life is pretty amazing. A huge thank you to Rowena!
Baby Culann was born on dec 11th 2013 and had some problems from birth, asd, vsd and PDA heart issues and also an exomphalos in his tummy, so was in intensive care for 11 days and in hospital until dec 31st. He was ng fed for a few days but was feeding normally when leaving hospital on the 31st. Unfortunately Culann got broncilitis and was put back into hospital he also picked up 2 viruses and was back on the ng feed, he was in hospital for 3 weeks and even though we would try to feed him orally every time, his volumes went down and down to the stage he was refusing the bottle, also he was on medication for reflux as he was spewing on his feeds. When he recovered from his sickness we were very frustrated that Culann would not take the bottle no matter how hard we tried without causing distress to him. At this stage Culann was 4 months old, his heart issues had sorted themselves and we were happy with Culann's overall health except for his feeding issues. This was then I came across Rowena's website and on reading the testimonials it was just like me reading about my own baby, I emailed Rowena right away and actually paid for the full weeks support. We were very impressed when Rowena emailed back very promptly refunding us our monies as she said we need to fill out a very detailed questionnaire to check could she be of assistance to us. It proved to us right away how genuine Rowena was. We filled out the questionnaire and Rowena promptly emailed us to set up a skype appointment. We then spoke to Rowena and after a good chat she explained to us about bottle aversion and about behavioral issues. We then followed Rowena's plan which was so easy and logical and couldn't believe how fast everything came right. We were amazed how Culann suddenly started feeding from the bottle with very healthy amounts. Culann is feeding on high energy formula so he doesn't take big volumes but we are ecstatic that the ng is gone and also all the spewing is gone and he is off all reflux medication. We would recommend Rowena to anybody who's baby has feeding problems. We can now begin to enjoy our beautiful baby boy.
Charlotte - Ireland
Ellie was born with a congenital heart defect. After complications from her first open heart surgery, she was left unable to swallow. As a result, she had to be tube fed from the time she was 2 1/2 weeks old. Ellie finally was allowed to start trying to eat orally when she was 6 months old. By then, she had developed an aversion to anything in her mouth. After months of speech and occupational therapy, Ellie had progressed enough to put food in her mouth, but she would spit out most of her meal. She would only drink around 2 ounces from a bottle. A friend suggested that I contact Rowena for help. Rowena took a detailed health history and then developed a program to help my baby eat orally. She contacted us daily via email and was very quick to respond to my questions. After approximately 2 weeks on this program, Ellie could swallow small amounts of a variety of foods and drink up to 20 ounces of milk from a cup per day! We still have room for improvement, but Ellie is developing the skills she needs to eventually get off her feeding tube. Thanks Rowena!
Shannon - USA
Rowena and her feeding programs WORK! My son Alexander was born with a heart defect and kidney problems that necessitated a 2 month hospital stay when he was a week old. While there, he was fed through an I.V. He never learned to eat like a normal baby. From there, he was put on an NG feeding tube, and eventually a G-tube ( a feeding tube directly into his tummy). Alexander has never eaten enough by mouth to even stay hydrated. We have always fed him through a tube. His doctors, (and he has a whole lot of specialized doctors) kept telling us to feed him more, but every time we fed him (through his feeding tube of course), he would throw up. We just got used to feeding him twice every time we fed him. In addition to the feeding tube, doctors had Alexander on medication for reflux and even considered a surgery to kind-of “tie” his stomach, to prevent him from throwing up. We were at our wits end, as Alexander was almost 14 months old, and hadn’t been off a feeding tube since a week of age. This is when I met Rowena through her website. I was desperate to find something. Rowena asked me numerous questions about Alexander’s history and his feeding behavior. She said that based on my answers she suspected his feeding issues were behavioral rather than medical. She told me she thought it could be possible to get Alexander to eat and drink all his food orally within a couple of weeks. She explained what I would need to do. It made sense but my husband and I were skeptical because what she suggested sounded too simple to make a difference. Doctors had been working on his eating problems for over a year and they had not made these suggestions. We almost “walked away”. My husband and I talked about Rowena’s ideas for a few days, and decided that because they would not harm Alexander we had nothing to lose… we were already at the bottom! Rowena provided us with written plan for Alexander detailing her recommendations and we started. I emailed her every day to let her know how his feeding had gone that day. Every time I e-mailed Rowena, she was quick to e-mail back with caring and appropriate responses. By day 4 there was not much progress as I had hoped and I got a bit skeptical thinking that this was NOT going to work. I started thinking that maybe we had indeed found some wild program and that helping my son to eat normally was only a dream. Rowena encouraged me to be patient and keep going. She said it will take time for Alexander to learn what he needs to do. We kept with the program, and then only a day or two later IT HAPPENED! My son suddenly figured it out. He started to eat. We no longer needed to tube feed him! He started eating full bottles of milk…GONE. And he eats solids too! And he doesn’t throw up ever. I cannot tell you what a miracle it is. He is gaining weight, and we are finally getting a healthy baby with all his eating completely oral! Yeah!! UPDATE: Now here we are almost 3 months later and Alexander continues to eat fine. From the day he started to eat orally, things have just continued to get better. He is eating so many different types of food and enjoying it. He rarely throws up and is off all of his “reflux” medication. We continue to be grateful that Rowena was so willing to help our son.
Marsha - USA