Lilly Shortland was ecstatic to meet her first-born child.
“It was like wow – did I make her? It was unconditional love.”
But when her son Kahurangi-Toa Shortland-Pattison – her third child – was born she was too sᴄᴀʀᴇᴅ to even look at him.
“It took me two days to hold him. I tried not to get attached because if something happened during the birth and he didn’t make I didn’t want to feel this giant gaping hole. He looked like he had a sᴛʀᴏᴋᴇ, his face had completely sunk, it was like what have I done?”
Kahurangi-Toa (Kahu) is 7 months old. He ꜰᴏᴜɢʜᴛ his way into the world on July 8 – 2018 – and he’s still ꜰɪɢʜᴛɪɴɢ. Before conceiving the wee boy, Shortland had suffered a ᴍɪsᴄᴀʀʀɪᴀɢᴇ and an ᴇᴄᴛᴏᴘɪᴄ pregnancy. She never thought she would ᴄᴏɴᴄᴇɪᴠᴇ again. “I got into a place where I didn’t want to do it any more. It was too ᴘᴀɪɴful telling everyone you are pregnant, then not, [it] is devastating.” But a baby brother for her daughters Mere-Rose, 6, and Tracey, 5, was something she still wished for. “He was a gift. I didn’t want to ᴛᴇʀᴍɪɴᴀᴛᴇ, to be honest I was being sᴇʟꜰɪsʜ,” she said. “We didn’t know if I could have any more children and to find out it was a boy was a double bonus. I did every test under the sun to see if he had any ᴅᴇꜰᴏʀᴍɪᴛɪᴇs without putting him at risk and if there was any major sign he did have something wrong with him I don’t think I would have changed my mind. “The bottom line is he had a chance and I took that chance. I didn’t do that lightly.” Twenty weeks into her pregnancy, Shortland, 25, and her partner Elijah Pattison, 30, were told their unborn baby had Tetralogy of Fallot. This is a complex heart condition which causes oxygen-poor ʙʟᴏᴏᴅ flow out of the heart to the rest of the body.
Sᴄᴀɴs ʀᴇᴠᴇᴀʟᴇᴅ ᴛʜᴇ ʙᴀʙʏ ʜᴀᴅ ᴀ ʜᴏʟᴇ ɪɴ ʜɪs ʜᴇᴀʀᴛ, ᴍᴀʟꜰᴏʀᴍᴇᴅ ᴠᴀʟᴠᴇs, ᴀ ɴᴀʀʀᴏᴡɪɴɢ ᴀᴏʀᴛᴀ ᴀɴᴅ ᴀ sᴍᴀʟʟ ʟᴇꜰᴛ ᴠᴇɴᴛʀɪᴄʟᴇ, ᴡʜᴇʀᴇ ᴛʜᴇ ʟᴇꜰᴛ sɪᴅᴇ ᴏꜰ ᴛʜᴇ ʜᴇᴀʀᴛ ᴡᴀsɴ’ᴛ ʙɪɢ ᴇɴᴏᴜɢʜ ᴛᴏ ᴘᴜᴍᴘ ʙʟᴏᴏᴅ ᴛᴏ ᴛʜᴇ ʙᴏᴅʏ.
Tᴏ ᴀᴅᴅ ᴛᴏ ᴛʜᴇɪʀ ᴡᴏᴇs, ᴡʜᴇɴ Kᴀʜᴜ ᴡᴀs 9 ᴡᴇᴇᴋs ᴏʟᴅ, ꜰᴜʀᴛʜᴇʀ ᴛᴇsᴛs ʀᴇᴠᴇᴀʟᴇᴅ ʜᴇ ʜᴀᴅ Cʜᴀʀɢᴇ sʏɴᴅʀᴏᴍᴇ – ᴀ ʀᴀʀᴇ ᴀɴᴅ ᴄᴏᴍᴘʟɪᴄᴀᴛᴇᴅ ɢᴇɴᴇᴛɪᴄ ᴅɪsᴏʀᴅᴇʀ.
“Our world was turned upside down. With Cʜᴀʀɢᴇ sʏɴᴅʀᴏᴍᴇ one of the main sʏᴍᴘᴛᴏᴍs is ʙʟɪɴᴅɴᴇss and ᴅᴇᴀꜰɴᴇss. To find out your son is ʙʟɪɴᴅ and ᴅᴇᴀꜰ, has a tracheotomy and could be ᴍᴜᴛᴇ. . . I broke down.
“What kind of person would bring a child into the world that couldn’t see, hear or play?.”
Kahu has suffered a number of ᴄᴀʀᴅɪᴀᴄ ᴀʀʀᴇsᴛs and multiple episodes where he sᴛᴏᴘs ʙʀᴇᴀᴛʜɪɴɢ between three to 10 times a day. Lᴀsᴛ ᴡᴇᴇᴋ, ʜᴇ ᴡᴀs ʀᴇᴄᴏᴠᴇʀɪɴɢ ꜰʀᴏᴍ ᴏᴘᴇɴ ʜᴇᴀʀᴛ sᴜʀɢᴇʀʏ ᴛᴏ ʀᴇᴘᴀɪʀ ᴛʜᴇ ʜᴏʟᴇ ɪɴ ʜɪs ʜᴇᴀʀᴛ ᴀɴᴅ ᴛᴏ ʀᴇᴘʟᴀᴄᴇ ᴛʜᴇ ᴘᴜʟᴍᴏɴᴀʀʏ ᴀʀᴛᴇʀʏ ᴛʜᴀᴛ ᴘᴜᴍᴘs ᴏxʏɢᴇɴ ᴛʜʀᴏᴜɢʜ ᴛʜᴇ ʙᴏᴅʏ.