Tira & Keepa

With our first son Tira we had a normal pregnancy.He was born full-term after a fairly quick labour weighing 7lb 1oz. While my midwife was weighing him she noticed that he was covered in blotches and called for the paediatrician to examine him. He was monitored overnight and bloods were taken. The next day blood was taken from myself and my husband and it was later found that we have a rare condition called Alloimmune Thrombocytopenia - while carrying the baby my body doesn't recognise my husband's blood in our baby and destroys its' ability to clot. Tira’s platelet count at birth was 7 (normal being 150). An ultrasound on his head showed that he had had 2 bleeds on his brain. Tira’s platelet count gradually built up on it’s own, he reached all his milestones and an ultrasound almost a year later showed that the bleeds in his head had healed leaving no scars.

When we fell pregnant with our second son Keepa we were counselled by the fetal maternal medicine team in Wellington who were amazed to meet Tira and to see that he was in such perfect condition – usually a couple would lose a baby with this condition first and then they would investigate why and go from there. We were now under their care which meant a number of trips back and forth from Wellington from 20 weeks with the possibility of our baby having to be born anywhere from 26 weeks and weekly infusions for me that meant an 8 – 12 hour day in hospital every week . While inside me Keepa was sedated three times, received three platelet transfusions and was found to be anaemic(which they could not find any explanation for) so was given a blood transfusion.

Although it was by far a more “labour intensive” pregnancy and a real emotional roller coaster for our whanau and close friends we have had the best possible outcome - our little whanau is now complete. Keepa was born via c-section weighing a healthy 7lb 7 oz at almost 38 weeks in Wellington hospital and was discharged from neonatal to Wairau hospital after 5 days. His platelet count at birth was 160 and he will continue to be monitored for some minor health issues.

Having almost lost both boys a number of times we definitely know how lucky we are to have them. I will never cease to be amazed by their strength and determination coming into this world and will be forever grateful for the medical care we received.

Liam

Liam was diagnosed ante-natally at 20wks with congenital heart defect. He was born 6 weeks premature after movements ceased, cord wrapped around neck 6 times! Flown to Wellington NICU within an hour of birth, the following day to Starship hospital. Open heart surgery at 2 weeks of age, weighing 1.8kg. Arterial switch and VSD closure carried out during 9 hour bypass surgery by the great Kirsten Finacume. At 5.30am the morning following surgery, cardiac arrest occurred and after 45 minutes of CPR and heart massage (thankfully his chest was still open post surgery) was attached to an EKMO machine which circulated the blood through his body letting his tiny heart and lungs rest. He was the smallest and youngest baby to ever be attached to this machine. After 3 days it was decided to turn the machine off and miraculously his heart and lungs kicked in. He was still ventilated for weeks following and developed a blood clot and severe odemia which made him incredibly ill. His body could not process fat, so he was on a very small and thin diet through a nasal gastric tube for weeks following. He was so swollen and full of fluid that his body was like play dough and he had to be turned constantly with as little stress as possible to prevent permanent nerve damage and sores. After 49 days in ICU he was released to the ward after 2 weeks of gradual weaning off ventilation. He was now only 1.6kg, but very alert and very placid. After 10.5 weeks and a last minute double hernia repair we were able to bring Liam home.
He has ongoing issues and a lot of people looking out for him, but he is the most joyous, mischievous and clever wee boy and it is a privilege to be his mum.
Liam the Lionheart is a little star and has taught us more in his short life than we could ever imagine possible.

Martha

Martha was diagnosed with a complex heart condition at 6 weeks after she gained little weight since birth. Once discovered we were immediately flown to Greenlane Hospital. They explained to us that her lungs couldn’t drain off excess fluid meaning that as we fed her we were drowning her.The aorta, which takes blood from the heart to the rest of the body, and the pulmonary artery, which takes blood to the lungs were joined. The result is oxygenated blood is mixed with non-oxygenated blood, making heart failure inevitable. When Martha first went into surgery, she had to have the two arteries separated, a valve replaced and a hole in her heart repaired. Her first surgery at 7 wks was basically replumbing. The outside of a cow’s heart is used to patch the hole. The valve they replaced is from a donor. Martha needed to have the valve replaced a month before her third birthday. The donor valve doesn’t grow with her as she does and becomes too small for her. She will need to have this replaced again in a few years & then at least one more surgery before the age of 20.

Although she has her heart condition she is a bright, bubbly, energetic young girl. She isn’t able to play contact sports or run great distances, feels the cold but she understands why. When asked ‘why does she have a large scar on her chest’, she confidently says ‘when I was born, my heart didn’t work properly, so they fixed it’.
We appreciate every day with her and thank medical technology to have given her a chance at life.

Kaleb

Kaleb was born with Hypoplastic left heart, which basically means the left hand side of his heart did not develop - he has had 3 open heart surgeries, one at 6 days,12 weeks then at 3 years, plus lots of little operations in between. He is medicated 4 times per day, and has regular blood tests.

He is such a brave little boy. He chooses which finger we are going to prick and sets up the blood machine for his blood tests. He is not to phased by his condition, he tells everyone he has a sore heart that needs to be fixed sometimes. He does most things other kids do, however he gets puffed easily and really feels the cold.
Usually he looks forward to going in to the hospital to see his doctors and nurses UNLESS they are going to hurt him. He enjoys having his heart listened to and oxygen levels tested and loves being weighed and measured.
He even says at the moment he wants to be a doctor that fixes hearts when he is older. It’s those comments that break my heart as he just may never get that old.
But at the end of the day he is a happy little boy and his condition makes him who he is and has made our family stronger and look at life in a different way. I feel blessed we were chosen to be given our special little man.

Mackenzie

Mackenzie Sage was born 5/1/09. She was airlifted to Wellington Neonatal Intensive Care Unit 13/2/09 and was diagnosed with Septo Optic Dysplasia, the result of a midline brain malformation. She is blind, has hormone deficiencies which she medicated for 3x day (forever) and has feeding issues. She is fed soley through a tube in her stomach. SHE IS MY HERO! She is my angel and has touched the lives of so many people. She is an old soul, wise and knowing. I love her and would not change her for the world.