“We wanted to breastfeed and did all the classes to prepare, got all the kit etc but from the beginning it was a struggle.
My nipples cracked and bled really quickly as my daughter Paige clusterfed on her second night with us at hospital; the nurse had to help and top her up with some bottled milk but everyone really pushed me to continue with breast feeding. We went on to a support centre for me and Paige to stay for a few days and still they pushed breast feeding even though I was exhausted and wanted to give up. When they weighed paige she was losing weight, all the feeds hurt and I just wanted to sleep.
They let us go home after 3 days and I spent a sleepless night at home while Paige screamed and wouldn’t settle and I tried to feed but it was so difficult. Ever since birth she’d been spitting up and everyone had said she was a refluxy baby and not to worry. The midwife came by and weighed her, she’d lost 16% of her birth weight by this point but was still perky so the midwife advised I go to breastfeeding support at the hospital the next day. We continued trying to breast feed that afternoon and evening until my nipples were bleeding on one breast so we were left with one boob to use. That night my husband put his foot down and went and bought formula to help me out and we mixed it up.
She started vomiting in huge amounts, obviously everything she was eating was coming back up. We went to breastfeeding support the next day where she vomited again after they gave her a small bottle of formula and they sent us to pediatrics who admitted us back to the ward to monitor her weight. For 3 days we were told to feed her bottled formula on a schedule as she lost more and more weight until she started to jaundice and on the Friday bloods they said her liver was leaving markers and admitted to neonatal ICU.
She went to nil by mouth as her liver started to fail and her blood stopped clotting. They had to do two plasma transplants to help her out and pump her full of vitamin k to help clotting. On the Sunday they started feeding her a special formula that doesn’t have milk and she gained 300 grams in 48 hours (the nurses had to weigh her 3 times they were so shocked).
Eventually on the Wednesday we were given a confirmed diagnosis that she had Galactosemia so can never have any dietary lactose since her liver can’t metabolise galactose.
We’ve been on her special prescription milk for over a year now and she’s a lovely thriving little lady with a cheeky personality. When we first started going to groups i felt so weird getting a bottle of formula out while everyone whipped out a boob and I felt like I’d somehow failed Paige because I couldn’t give her what everyone had encouraged me to. I would sometimes get looks at the fact that I was feeding her formula but people need to remember that theres often a story behind it and I’m doing whats best for my little girl!”
We can’t thank Rachel enough for sharing her turbulent feeding journey. I have a member of the family who has Galactosemia so know just how dangerous it can be. Due to it being in the family, my husband and I were tested whilst I was pregnant; my husband was a carrier but luckily I wasn’t. Both parents need to be carriers in order to pass on Galactosemia and even then, it’s a 1 in 4 chance that it will affect the baby. The genetic disorder is rare, but can be very serious so I urge expectant parents and new parents to become aware of the condition.
Galactosemia is still relatively unheard of for most people and as Rachel went on to say: “I’d be happy to share my story, not just for feeding awareness but for Galactosemia awareness! It’s so unknown but so scary in the early days, we’re lucky paige hasnt had cataracts and at the moment seems really switched on but its a horrible waiting game to see if anything occurs!”
Awareness is key and it’s important to remember that reflux and other milk/dairy allergies are far more common. However, I encourage all parents to urgently speak to their midwife, paediatrician or consultant if your newborn baby is constantly violently sick after feeding. More information of Galactosemia can be found here: http://www.galactosemia.org/understanding-galactosemia/