Our daughter Laura was tubefed from birth. Because of her AVSD heart condition she never had the energy to suck a full bottle. She weighed in at just over 2kilos when she was born and weight gain for heart surgery between 4 and 6 months was paramount. In the hospital neo-natal unit, the goal was to have her drinking her full bottles before she came out, but as the days went on it was clear to us that that looked like the unattainable.

After two weeks the hospital and ourselves agreed it was unlikely Laura would manage to suck sufficiently to sustain herself and they proposed that we take her home with a NG tube. They showed us the tubefeed and we were discharged. As new parents we were terrified anyway and the fact that our baby was especially tiny and had a heart condition added anxiety, and on top of that, we now had to feed her by tube!

We were blessed with a fabulous district nurse who came every day the first week, weighed Laura and was also confident to put the tube in. We could schedule the district nurse to replace the tube, however, we could not legislate for when Laura might pull it out! Night-time was when the tube was most vulnerable with Laura's hands free to roam so we bought the babygrows with mittens and she wore them at night.

At 5 and a half months Laura had her surgery. It went really well and this was a huge milestone for her and a massive relief for us. We had been so lucky as she has been so well up to that. On a practical level, the tube had been our biggest headache and we were very used to that by the time she had surgery. However we knew the tube could not be pleasant for her and she also threw up a lot and we felt that might be connected with the tube. (I am not sure whether the tube itself was an irritant and led to the vomiting or whether we were over-feeding her in our anxiety to put on the weight, but certainly she threw up after almost every feed and this stopped as soon as she stopped tubefeeding). The surgery was a great success and we were told that from a medical perspective, there was no reason for her to be tubefed anymore.

However of course nothing is ever that simple. By the time Laura had got to surgery she had stopped sucking altogether. In fact, from about six weeks, she had stopped sucking and started to gag when we presented the bottle to her. She also would gag when we presented the soother. We didn't know what to do about this, the doctors mentioned oral aversion but didn't have any suggestion as to what to do. Her cardiologist suggested we start spoon feeding baby rice at four months and that was not successful (more gagging and certainly no interest in the food).

At that point we asked for help: our cardiologist would refer us to speech and language in the hospital but he didn't hold out much hope of an appointment at this early stage. We felt anxious that Laura has lost her suck and were keen to find out if there was anything we could be doing to help her at this point, even though we knew it was unlikely we could attempt to take her off the tube in advance of the surgery. We asked our service provider and they sourced a speech and language therapist from another area who was an expert in feeding. This was the first major step on the journey from tube to oral feeding.

Our speech therapist explained to us that Laura had lost her suck and did indeed have an oral aversion. We needed to slowly, gradually, start re-introducing oral stimulation to get Laura comfortable with having things in her mouth. She gave us exercises to do, massaging Laura's face and mouth and also exercises to do (with clean hands!) inside her mouth, stroking her tongue, her gums and inside cheeks. She showed us the best way to hold Laura when trying the spoon feeds and to feed her with thicker liquids for the moment (e.g. baby rice) and not to attempt to feed her with the bottle. She started attending us when Laura was about 4 and a half months, prior to her surgery and we saw her every couple of weeks after that.

Progress was slow and we needed lots of patience! After several weeks we noticed that Laura stopped gagging when we were doing the exercises inside her mouth. The we noticed that she didn't gag with the spoon feeds. However often she would not open her mouth for the spoonfeed and at times you would wonder whether we were making any progress at all! After her operation, when she was about six months, the speech therapist gave us a little cup for us to give her some milk. Again progress was slow and Laura showed little interest in the food or the milk. At eight and a half months, we went back to see her cardiologist. He was very pleased  with the condition of her heart and how her scar had healed. We mentioned the feeding to him and he suggested that we come back in six weeks and if the feeding was not sorted she would be admitted to hospital and they would pull the tube, let her get hungry and resolve this issue. While I was relieved that our cardiologist, in whom we had total faith, was regarding the feeding issue as his problem, we dreaded the idea of going back into hospital. We had hoped that Laura's days there were over. We didn't like the idea of her starving, but we knew this problem needed to be sorted.

When Laura was nine months, one day she pulled the tube out. This was not an unusual occurrence but that day we asked each other - will we try and see how she gets on without it? At this point we had no gagging and she might sometimes take a spoonful or two and perhaps a couple of drinks of milk...but that was it!! However we knew that she had learnt how to eat and drink and we wondered in our hearts was it just being tubefed, she didn't realise that she needed to eat to satisfy hunger? We rang the dietician in the hospital, who was wonderfully encouraging. She was completely supportive of what we were thinking of doing and told us to go for it. Laura was now a good weight, had surgery behind her, was off all her diuretics and if we could get her off the tube at home that was much better than hospitalisation – so we agreed! She advised us to go immediately to our GP who would monitor Laura's progress and then she would ring us in a week.

The first day and a half was scary. Laura took very little and we watched over her anxiously. We kept a diary of what she ate and drank. Then mouthful by tiny mouthful something clicked with her...she started to eat and drink enthusiastically! All we were feeding her was milk and liga which we spoon fed...not the most healthy option but we knew there would be time enough for us to focus on her diet! After a week we knew there was no going back. Laura was eating and enjoying it! We had an issue with constipation due to lack of intake the first few days but the GP helped us with that and it was resolved. Apart from that no issues. No tube - what joy!

Now my daughter is 14 months. Last Friday she went to a family lunch. Two of her cousins are fussy eaters (age 3 and 7) and only ate chips. My daughter ate some fish soup, followed by a little chicken and spinach pasta and then a little ice cream (for a treat!). Basically she ate the same lunch as her Mum, only smaller quantities. How proud I was of her!

Having a baby with a heart condition makes for a tough first few months. However, for us, in some ways, we had a little girl who thankfully showed no symptoms of her heart condition apart from her poor feeding and we had faith that her cardiologist and surgeon would fix her heart and that was a huge comfort. However we knew that her feeding  would not be fixed by surgery and was a behavioural, rather than a medical problem. Although we met lots of parents of kids with down syndrome and a heart condition, in the first few months of Laura's life we met no one who was tube dependent like we were. If your baby is tube dependent, hopefully our story will encourage you to believe there will be light at the end of the tunnel. From our experience the most important things to do when your baby is tubefed are:-

-Source a good speech therapist with training in feeding issues (this is a niche area of expertise and lots of them do not have it)

-Have the advice of a good dietician

-Get the support of your GP

-Don't worry if there is no prospect of your child feeding independently before surgery. Weight gain will be paramount at that point, the tube is a necessary evil!

-You may feel at some point, post-surgery that the time is right for your baby to try and feed herself. With the support of the professionals, go for it - trust your instinct!

-You need lots and lots of patience. Don't despair...your baby will get there and when she does it will be so worth it!

Good Luck!

Ann & Eugene McVeigh.