Breastfeeding a seriously ill child through heart surgery and tonnes of other hurdles – Selena’s story
My daughter was diagnosed at 18weeks gestation as having “heart issues”. We had ultrasounds every 2 weeks but nobody could definitively tell me what was wrong with her heart.
The night she was induced was incredible. I had a 2hr labour and the waters broke, she was born and the placenta were all delivered with 15 mins start to finish.
On her birth she had snapped her cord so had blood loss and was double clamped as the tissue was torn and not a good hold. She was blue from the start and needed oxygen.
On day 1 she was diagnosed as having a murmur but on day 4 it was declared as Tetralogy of Fallot.
My world crashed in on me that day.
Here I was a divorced single mum with three older children and a child with severe medical condition.
Luckily she was also born with an in bred ability to find and attach to the breast. She has fed well from the very beginning and I had no problems with mastitis as I did with my other children.
At 13 weeks old she had minor surgery involving a 2 week stay with me by her side the whole time expressing away until she could take 5ml an hour, 4 days post op.
When we got home she was having trouble gaining weight and was diagnosed failure to thrive. On no less than 5 occasions I was told to wean her “for hr own sake” but I was determined that she needed my milk more than anything else.
She has sensory issues with spoons etc from being forced medications orally and intubations. The only thing she would allow near her mouth was a breast. She is behind developmentally by around 4mths physically and in speech.
She has extremely low iron which is borderline anemic even whilst she is taking supplements.
By 6 mths she weighed just 5kg, at 12mths 7kg and now at 16mths she still weighs only 7.6kg.
She had more minor surgery in Oct 2010 aged 10mths and I was there expressing away again.
And now we are preparing for major Open Heart Surgery this time which keeps getting put off because of the cell counts in her blood.. But I will be there again, sleeping over and expressing away so as I can continue our journey.. And I’m so passionate about breasfeeding that I’m training to be a part of the Australian Breastfeeding Association Community Education Team..
‘Im so glad I have never listened to health professionals who have been telling me to wean so they can see how much she is drinking. I know how much she is drinking… enough to keep her safe, secure and nourished.. Roxie knew exactly what she was doing when she picked me to be her mum and to advocaate for her right to breastfeed through her surgical journey.