Lilly Shortland talks about her son Kahurangi who has heart defects and Charge Syndrome.
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 scared 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 stroke, his face had completely sunk, it was like what have I done?"
Kahurangi-Toa (Kahu) is 7 months old. He fought his way into the world on July 8 – and he's still fighting.
"He was a gift. I didn't want to terminate, to be honest I was being selfish," she said.
Little Kaurangi-Toa Shortland-Pattison faces a lot of hurdles. Photo / Supplied
"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 deformities 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 blood flow out of the heart to the rest of the body.
Scans revealed the baby had a hole in his heart, malformed valves, a narrowing aorta and a small left ventricle, where the left side of the heart wasn't big enough to pump blood to the body.
To add to their woes, when Kahu was 9 weeks old, further tests revealed he had Charge syndrome - a rare and complicated genetic disorder.
"Our world was turned upside down. With Charge syndrome one of the main symptoms is blindness and deafness. To find out your son is blind and deaf, has a tracheotomy and could be mute. . . 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 cardiac arrests and multiple episodes where he stops breathing between three to 10 times a day. Last week, he was recovering from open heart surgery to repair the hole in his heart and to replace the pulmonary artery that pumps oxygen through the body.
Baby Kaurangi-Toa Shortland-Pattison after surgery. Photo / Supplied
"He had to have a pacemaker inserted as a safeguard. He had a pretty bad night and was struggling to breathe because his oxygen levels kept dropping. His heart was erratic which is a concern."
Kahurangi-Toa - which means blue warrior in Maori - was born 11 days after his mother's waters broke.
He is affectionately known as "magpie" by medical staff at Auckland's Starship hospital.
"He loves shiny things, especially cellophane. Sometimes he has a bad temper but he's generally happy and bubbly and smiles a lot".
Kahu's home is currently the hospital. He has never seen the light of day or gone home. He doesn't have a nursery to go home to "just in case".
Baby Kahurangi's parents Elijah Pattison (left) and Lilly Shortland. Photo / Nick Reed
There are a few family photos of Kahu with his family and a bronze mould of his hand and arm - gifted by Baby Loss NZ "just in case" - he dies.
"I found it really hard to connect with him when he was born. I didn't buy any clothes, booties or blankets. Everything he owns is in the hospital purely and simply because it's hard knowing he might never leave."
Shortland wants to thank Heart Kids for the amazing support and kindness.
"Heart Kids help with petrol vouchers, toys, pre-frozen meals - there were days my kids didn't go to school because I couldn't afford to get them lunch. They are a shoulder to cry on, so loving and caring."
Shortland hopes to resume her nursing degree once Kahu is well but she's steering clear of children's wards.
"It's too sad. I am here 24/7 and have seen families that come to hospital who never leave with their babies".
Although her heart "hurts" that her son is in constant pain, unable to roll over, laugh or talk, she knows in her heart Kahu will grow up and have a fulfilled life in his own time.
"One dream is to open my car doors and have all three children run out- even if Kahu's in a wheelchair.
"My long-term goal is for him to come home so I can show him off to the world. I am grateful we get the time to spend with him no matter how long that might be. I can say 'I did it', I tried my best and we gave him the best chance we could give him."
