As with my first pregnancy, we had a private scan at 30 weeks with the second,as we wanted to ensure all was going well for our baby inside. The sonographer did all the measurements but kept remeasuring the baby’s femur. It turned out that it was shorter than it should have been for the stage we were at. That was when I started to do some research about what that could mean. Well, it was a soft marker for Trisomy 21, better known as Down syndrome! The short version of the story is that we were referred to the Foetal Medicine Unit at the University Hospital of Wales, where we decided to have an amniocentesis for clarity. Shortly afterwards we had the confirmation that our baby had Down syndrome. Our consultant was very helpful and supportive, and available at any time or day. He gave us websites and group information and also put us in touch with a paediatrician to discuss health implications. All very positive! (Although he did euphemistically mention “options”.) It was a difficult time for us coming to terms with the diagnosis, however on the flip side we were able to prepare ourselves and ensured everything was in place for his birth.
Gwilym was born at 37+5 weeks. It was a speedy, natural delivery. I was strep B positive at the time, but I was not listened to and as a result was administered antibiotics too late. However, Gwilym took care of this and was born in his sac, so was protected anyway. He entered the world very alert with a lovely baby cry. A paediatrician checked him over and he was all good. We started our breastfeeding journey right there. As we stayed for five days in hospital, with several blood tests and ECGs for Gwilym, we had a private room, which definitely helped to set the right atmosphere.
Trisomy 21 comes along with low muscle tone. Also, very often with significant heart problems. None of which is very helpful with feeding, as babies with Down syndrome tire quickly and have lower energy. Another issue is a lower immunity to infection and smaller airways. Also as a result of lower muscle tone, there can often be a problem with swallowing and aspirating fluids. This is why a lot of children with Trisomy 21 have an nasogastric tube, which delivers their milk directly into the stomach – my biggest fear. Because of this many people think it’s not possible to breastfeed, although it is more important than ever to get the best immunity possible!
Gwilym has no heart issues so we are very fortunate. He was very sleepy, and he had jaundice for seven weeks. I insisted on breastfeeding throughout. In hospital I made sure to have lots of skin-to-skin, latch him on often and to practise a good latch. I also hand expressed and syringe-fed Gwilym some milk. He had to have light therapy for the jaundice while we were in hospital. The nurse on the maternity ward came in to remind me to feed him at night as he would sleep quite happily. I made sure to push him for a five-minute feed every two to three hours. It was very hard going but I kept tapping his back, tickling him or blowing in his face or I took some of his clothes off. I knew my letdown was fast so five minutes was plenty. Another issue we faced was his low resistance to illness, so he seemed to catch every cold possible. This meant he had a stuffy nose all the time. I used saline spray and suction to clear it out twice every day. He also suffered from a blocked tear duct on a regular basis. He was pretty floppy, so a good supportive feeding cushion made all the difference for us. Overall, our challenges were nothing major in comparison to what many mothers of babies with Down syndrome face, and we made it to well over two years of breastfeeding and he stopped just before our twins were born. I can’t say enough about how important it was for me to put every effort into breastfeeding. It has helped greatly with his coordination of mouth and tongue, for example, and to strengthen muscles for speech later on.
You can follow Gwilym and see more beautiful photos of him here.
Written by Kristin Birkett, LLL Vale of Glamorgan, and first published in Breastfeeding Matters issue 230 (March/April 2019)