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Breastfeeding a seriously ill child through heart surgery and tonnes of other hurdles – Selena’s story

Posted on March 13, 2011
Filed under: Baby medical condition, Baby surgery, Failure to thrive, Low weight gain

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.

sl01

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.

sl02 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.

Filed under: Baby medical condition, Baby surgery, Failure to thrive, Low weight gain

Comments

6 Responses to “Breastfeeding a seriously ill child through heart surgery and tonnes of other hurdles – Selena’s story”

Leah on March 13th, 2011 9:11 pm

Good luck with Roxie’s future surgery and thanks for sharing your story! I agree that every little drop of breastmilk she gets is supporting her health and growth, she’s a lucky girl! Let us know how the next surgery goes if you get a chance :)
Selena Leigh on March 13th, 2011 9:48 pm

i also forgot to add the 3 hospital stays for blue TET spells, the 2 stays for UTIs and the stay for an allergy to a polymer which was supposed to help her gain weight..
Angela Pattemore on March 13th, 2011 10:53 pm

its being a tough journey for you, Roxie and family. But your a very strong woman, and a great advocate for Roxie and her needs! You’ll make a great aba community educator. I think you do an amazing job considering all the issues you face day to day. Xo
Sarah on February 8th, 2012 8:19 am

Well done for staying so strong and knowing that breast milk is best milk! There is nothing else that could help your little one as much as it through these trying times. It amazes me that health professionals would try and say otherwise.
I hope everything goes well for you and Roxie.x
Pixi on January 19th, 2013 8:07 pm

This story has really really touched me! Thankyou so much for sharing!
I was born with TOF as well, I’m 26 now, but the start of my life is much as you described here, except that I was much to weak to breastfeed, I could barely suck.

I am now breastfeeding my second baby and have had a lot of trouble, things are only just starting to settle down now and she’s 7 months old. You are amazing, thankyou so much for sharing your story. Roxie is very lucky to have you as her mama and I really hope things go well with her surgery!
xxx
Anna B on January 30th, 2013 6:27 am

It takes a truly courageous mother to defy proffessionals w/ intimidating credentials, and go w/ out instincts as moms. You are an absolute inspiration to anyone who is on the fence about BF. It takes confidence and getting the word out there that WE ARE CAPABLE!!!
God bless!