As soon as I was pregnant, I knew I wanted to breastfeed my baby if possible. At 22 weeks we were told our baby had a congenital heart problem called a complete AVSD (a large hole in the heart), we were also informed that the baby had a problem with their kidneys and were advised to have further testing to see what was causing these multiple problems. We had further scans and an amniocentesis leading to the diagnosis that the baby also had Down syndrome. For me, these antenatal diagnoses gave me time to prepare and research before our baby was born. One thing I was told by my consultant and midwife was that babies with Down syndrome and this heart condition often struggle to breastfeed, because of low muscle tone and breathlessness, but I was never discouraged from trying and was told I would have all the support needed.
Almost as soon as Olive was born, she started rooting and latched very quickly. It was an incredible, emotional moment for me, and I felt a huge wave of relief. Unfortunately, a couple of hours later Olive briefly stopped breathing and had to be rushed to the neonatal intensive care unit (NICU). She ended up spending three days there receiving help with her breathing and treatment for jaundice. She was given a nasogastric (NG) tube through which she was fed. I had expressed colostrum antenatally, which they gave her all of on the first night – and I thought I’d expressed way too much! The first two days, she was too poorly to feed from me at all and continued being fed through the NG tube, but I was encouraged to express and was provided with a pump in the hospital. I expressed what I could whilst my milk was coming in and she had that just topped up with formula. Despite these first few days being a total blur, I have a really clear memory of sitting, expressing and getting frustrated at how little milk I was getting. The nurse on the ward told me to stop looking at the bottle and to look at Olive whilst I was pumping instead; this genuinely made a huge difference.
I stayed with Olive in the NICU as much as I could and even through the middle of night. I started to love the visits at night because it was really quiet and even though she wasn’t feeding we had skin-to-skin which was just amazing for both of us. I found the first few days after giving birth incredibly hard, feeling like I had to stay positive for her, but I struggled being apart from her and from my fiancé and family.
On the third night in the NICU, they asked if I wanted to try and feed again, and I couldn’t wait. Unfortunately she had to have a last-minute procedure as she had pulled one of her IVs out and this pushed back her feed way past the time it was due. By the time we were trying I could tell she was both very hungry and very tired. Trying to feed was clearly stressing her out and she was getting increasingly distressed, so I told them to feed her down her tube and I went back to my ward. I was really upset and concerned she would lose the instinct to latch. I spoke to a midwife and emailed my breastfeeding counsellor who both reassured me that with time she should feed well again with me.
Day three and we were told she was well enough to be moved to transitional care, which meant she could be back with me. Almost as soon as we arrived on the ward, a nurse came and asked if I wanted to try feeding. She was simply amazing. She very gently adjusted mine and Olive’s position and, before we knew it, she was feeding. The next few days were still really hard. Olive still had her NG tube in and was still receiving top ups as well as feeding with me. They wanted Olive to feed every three hours, day and night, so I was in an intense routine of feeding and then pumping almost all the time. We also had to log everything – every feed, length of feed, nappies. Just as I thought I had cracked it, I would have a really hard night and feel like we were going backwards. The team asked if I wanted to try using a nipple shield to help Olive’s latch; this was a game changer for Olive. She latched far more easily and seemed to be able to nurse for longer.
The nurses decided to stop her NG top ups and see how she did for the next 48 hours before they took her tube out.
Olive continued to gain weight and they agreed to take her tube out, which felt like a massive step. I did a couple of top up bottle feeds as Olive’s jaundice was not improving quickly enough and we needed to get as much milk through her as possible. The next few days were a complete rollercoaster. We had doctors and nurses coming and going all the time, and I got very used to nursing Olive with a full audience! We were discharged from the hospital seven days after Olive arrived.
Once home, we moved to a more responsive feeding schedule, allowing Olive to feed when she wanted. She started to love a very long cluster feed through the evening and often into the early hours, and, as exhausting as this was, in my mind feeding Olive was the only job I had to do. So I got myself set up with snacks and binge-watched TV and enjoyed time with my girl. Olive continued to gain weight well until she was about eight weeks old. At around this time our GP pointed out that her weight had plateaued, and she had dropped on the growth chart. We were advised by our health visitor to give Olive a small top-up feed every day. As I was already pumping to build up a freezer stash, I was happy to do some extra and would pump in the morning after her first feed. My partner would give Olive the bottle later in the day, but she would only take the bottle if I was nowhere near the room, and often even out of the house! The doctor told us that since her breathing was becoming more strained, this was likely to be contributing to her burning more calories and therefore her weight plateauing, so our cardiac consultant put her on some medication which helped ease her breathing.
Olive is my first baby, so I have no experience to compare this to, but for me the biggest thing when nursing Olive is being super patient. She can take longer to feed than many babies, as she takes regular breaks; a large comfy cushion and a good supply of tea and biscuits are essential.
I used many resources for help and information, which for me were a huge lifeline. La Leche League, a Down syndrome breastfeeding group, my health visitor and the doctors, nurses and midwives all made me feel supported and gave me invaluable advice and the confidence to keep going.
By Sophie Hughes, LLL Leeds