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Life with Matilda, An AVSD and a Feeding Tube

Matilda and Frida were born a day apart. Amy and I met on the Positive About Down Syndrome Great Expectations Group and were pacing our living rooms at the same time for a good few days before our girls made an appearance. We have never met, but have shared messages and experiences over the last 6 months. As I have no experience of either feeding tubes or heart surgery, I asked Amy to prepare a piece to explain their experiences, as she gives great advice to other parents in similar circumstances. Just two weeks post-op, Matilda is thriving and I think it is incredibly helpful for new parents to understand that whilst medical issues can be scary, they can also be dealt with relatively easily.

Matilda was diagnosed at birth with Down Syndrome. Following 12 week screening, we received a high chance result of 1:28 that she would have Down Syndrome so it wasn’t a huge shock. But I was a little worried. Questions ran through my mind; would she ever live independently? Would she be able to communicate with us all? What would her brother and sister think? Never did it cross my mind that she would also have a heart condition.

At her 20 week scan, I asked the sonographer to triple check everything that could be a marker for a baby with Down Syndrome and was reassured everything was within range and 'normal.' So when she went for a routine heart scan at 2 days old I was sure we would be all good and free to go home from the hospital that afternoon. She was feeding well, slept well, and looked just as a newborn baby should- beautiful. Matilda went into the scanning room whilst I waited out in a family room and she was in there what felt like an eternity. Having previously worked in maternity units and having accompanied the cardiologist into scans with patients, I knew something must have been found, as it was taking far too long.

When the doctor came out and asked, “is your husband around so I can talk to you both together?” my heart dropped to my stomach and I felt sick. My husband was just down the corridor and was there in a flash. As the doctor sat there with a model heart in his hand and a pile of leaflets, he explained that Matilda had a complete Atrioventricular Septal Defect (AVSD). I sat and listened quietly so I could take it all in, whilst my husband sobbed through the whole conversation. We were told she would probably struggle with feeding, become breathless, sweaty, and puffy looking. We were advised that she would need an operation at Great Ormand Street Hospital (GOSH) at around 12 weeks old and she would have a target weight of 4.5kg before they would operate.

We returned to the postnatal ward and stood and looked at her through crying eyes - how would she be able to have open-heart surgery when she was so small?

When Matilda was 3 days old, they moved her to NICU and inserted a Naso feeding tube. We stayed beside her and were both trained to feed her through it so we could get home as soon as possible. A few days later after numerous examinations for hearing, sight, bloods, and other bits and bobs we were finally allowed to take her home.

Since we’ve been home Matilda has gone from strength to strength and with a combination of Similac high-calorie milk and breast milk (currently pumped), she steadily crept up the chart and made it past the 12 week/4.5kg target quickly and then just kept growing! She has been on two diuretics to help keep the excess fluid away and these have stopped the sweatiness, she had been working hard with her breathing and pulled in at the chest (which I understand is common) but she never complains and always smiles.

I have always had a bit of a love/ hate relationship with the feeding tube. It has served its purpose to help her to gain weight and she has gained it at a perfect rate but it has also had its down-side. She gradually lost the ability to suck by 3 months old (but she will get this back with practice). She also went through a phase of sticking her little fingers up to her face and pulling the tube out. One week when she was about 4 months old we had three trips to the hospital to get a new one put in. It was at this point I trained to do it myself and thought something has got to help keep these in. I spent a small fortune on tapes and printers and began designing cool stickers that keep the tube securely in. Having trialled several ways to cut the tape, I have perfected a technique that keeps it in place until it is due to be changed. Result!

Although it can seem a little scary having to feed your baby through a tube, it quickly becomes second nature and you could do it with your eyes closed after a few weeks. She has a feeding pump which makes feeding hands free, which is great because she sits at the dinner table and has her milk whilst we eat dinner.

At around 21 weeks old, Matilda attended GOSH on 16 December for her open heart operation. As I took her down to theatre at 8:30am, I promised myself I would hold it together and be smiling at her whilst she drifted off to sleep. That was the hardest moment of my life! I walked out of the theatre room sobbing and went to find my husband and just cried into his shoulder. We walked around London lost with nowhere to go (it was in tier 4 with everywhere closed). At 1pm we went to the ward and they phoned through to theatre and gave us the news that surgery had been successful, she was ok and was just being transferred to intensive care. When we were allowed to see her, it was a little scary seeing her attached to endless tubes and wires but by the evening she was off the ventilator. The next morning the chest drains were removed and gradually she was losing the wires. She was transferred to the recovery ward and we were told she would be able to take her home after a few day's stay. I was allowed to stay next to her and we got settled into the routine of the ward.

The following morning - 18 December - just two days after surgery, Matilda was sat playing and tolerating her tube feeds well. The doctor took one look at her and said “home time.” Matilda had done so well and surprised everyone. There was no need for her to remain in hospital any longer. I understand the average admission is about 6-8 days post-surgery.

We have now been home for two weeks and she has thankfully celebrated her first Christmas and new year at home with her family.

Her new year’s resolution is to lose the tube and feed independently and she is starting to slowly come round to the idea of breastfeeding, but I’m not yet letting the tube leave our lives just yet. My new year's resolution is to help other parents by providing them with my adapted stickers that keep the tube in and plan to start a new career - I’m leaving teaching to spend time with Matilda and to develop Tilly’s Tapes! Keep an eye out for Tilly’s Tapes because they will be available soon.

Edit 7.1.2021 - Tilly’s Tapes website for purchasing stickers for Nasal Tubes is now live!