'Perfect' baby dies after parents' gruelling IVF journey - but no one can tell them why

Jenay Berg and Aaron Hilton welcomed their first child Kyson after a five-year IVF journey. He...
Jenay Berg and Aaron Hilton welcomed their first child Kyson after a five-year IVF journey. He died soon after birth, and the couple still do not know why. Photo: Supplied
A Central Otago couple are desperate for answers after their baby boy - the result of a harrowing five-year IVF journey - died two hours after he was born despite a perfectly healthy pregnancy and labour.

Jenay Berg and Aaron Hilton spent five years trying to conceive and found out on Christmas Day they were finally pregnant.

Their son Kyson was born on September 6 - his due date - at 2.06am.

Berg’s pregnancy had been healthy and without complication and while her labour was long and hard, she was monitored throughout and nothing was amiss.

But when her baby was placed on her chest he did not cry or move.

“I don’t think anyone in that room thought there was anything wrong with him until he didn’t cry,” Berg told the Herald.

Staff rubbed Kyson’s chest and legs but he did not respond.

“I saw him open his eyes and move his mouth a little bit and then they cut the cord and took [him] straight over to the table,” said Hilton.

Specialists soon converged on the room and the couple watched as they all worked on Kyson.

“Everyone was working on him for 45 minutes… No one would say anything to us - there was one lady that kind of tried to reassure me, but no one else would really look me in the eye or say anything because I just think everyone in the room was just as shocked,” said Berg, who was also undergoing a post-delivery procedure at the time.

“It was the longest 45 minutes of our lives.”

“Then they came over and told us he didn’t make it,” said Hilton.

The Alexandra couple have no idea why their son died.

They are awaiting information from the Coroner and a post-mortem examination.

Jenay Berg and Aaron Hilton welcomed their first child Kyson after a five-year IVF journey. Photo...
Jenay Berg and Aaron Hilton welcomed their first child Kyson after a five-year IVF journey. Photo: Supplied
They have no idea what went so wrong for Kyson given there was not a single issue with his heath during pregnancy or any part of his birth.

The couple were referred to Fertility Associates five years ago for help conceiving.

They were put on a waitlist and were told it could be up to 18 months before they started the actual IVF process.

While they waited they tried a round of intra-uterine insemination but it was unsuccessful.

Hilton said they felt “lucky” when they got the email 12 months later to advise they could begin IVF.

After months of “a lot of injections and a lot of hormone drugs” Berg underwent an egg retrieval procedure.

“We came out in the end with two viable embryos - one was Kyson and the other one is still frozen now,” she said.

“We were really lucky for our first transfer to stick and that resulted in the pregnancy with Kyson.

“I did a pregnancy test on Christmas Day that came up positive. And it was the first positive pregnancy test I had ever got.

“I knew we still had to wait for blood results and had to wait a few more weeks to make sure that it was actually okay but we told our families on Christmas Day - that was really special, we were just over the moon, everyone was amazingly happy … it was a pretty surreal experience.”

Berg had several days where she was affected by morning sickness but otherwise, her pregnancy was “pretty easy”.

She had a low-lying placenta but that corrected itself.

She then discovered she had Group B Strep which occurs in one out of every four women and can cause infection of the placenta, womb and amiotic fluid - and be passed on to babies during labour and delivery.

“That kind of freaked me out a little bit but was reassured that everything was going to be okay because I was diagnosed very early. They were able to give me the antibiotics and everything that I needed prior to Kyson being born.”

On September 5 - the day before Kyson’s due date - Berg went to the hospital early in the morning to be induced.

At 7.30am her waters broke.

“It was pretty straightforward really,” said Hilton.

“She had monitors on her all day to see the baby’s heartbeat and everything. And it was fine. Everything was fine all day.”

At about 5.30pm Berg was given an epidural and soon after she was ready to start pushing.

“She pushed for about an hour, then the epidural started to wear off a bit and she was getting into quite a lot of pain,” said Hilton.

“They had to get the anaesthetist to give her more pain relief, but he was busy with something else that was happening so it took him a while to get there.

“But once he did she managed to get some relief and get a little bit of rest for a few hours.”

At midnight Berg was pushing again but Kyson would not come.

She was given medication to increase contractions and then told she would need an assisted birth - either using forceps or by c-section.

“We just kind of put it in their hands - I said ‘do what you think is going to be safest and the best to get him out’,” said Berg.

Jenay Berg. Photo: Supplied
Jenay Berg. Photo: Supplied
It was decided they would try forceps first and if Kyson was not delivered within three contractions, a C-section would be performed.

The little boy finally came into the world on the third contraction, at 2.06am.

Less than an hour later Berg and Hilton were being taken to a room to say goodbye to their firstborn child.

They spent several hours with Kyson, cuddling him and talking to him.

They then called their mothers to break the tragic news.

Berg’s mother rushed south from Christchurch and her aunt who lives locally went to the hospital with Hilton’s mother.

They got to meet Kyson and helped Berg and Hilton dress him before other family arrived.

Berg said the day was “blurry”.

She had to have surgery because of a normal birth injury, leaving Hilton to speak to police.

“Because it was an unexplained death I had to give a statement on everything that happened,” he said.

When they reunited the couple spent as much time as they could with Kyson before he had to be taken away.

They had photographs taken with him and then at 4pm his little body was taken to Christchurch for a post-mortem examination.

“We didn’t have to [get the examination] - we chose to send him up just so we could try and figure out why this happened,” said Hilton.

“We still haven’t heard anything back, it’s still unexplained, we’re still waiting on more tests.”

Once the testing was done Kyson was brought home and spent a week with his mum and dad - being held and loved and meeting all of their closest family and friends.

“He got so much love that week- it was really cool because everyone was able to pick him up and have a cuddle with him if they wanted,” said Berg.

“It was a really, really special few days.

“And on the Wednesday we got everyone around and we got a bunch of balloons and everyone got to write something for Kyson - and then we released them.

“That was a really special day, but hard … even though Kyson was still there it just really hit home.”

The couple had their baby cremated and will have some of his ashes made into jewellery.

“So he can be with us all the time,” said Berg.

They also took prints and plaster casts of his wee hands and feet and many more photos.

The couple said the support from their family, friends and community has been “amazing”.

“We’ve got an awesome star that’s been named after us by a couple of our friends. It’s really cool.

“Our cupboards have been filled… everyone’s just kind of pulled together, the support has just been unreal.”

Hilton said Fulton Hogan - where he and Berg work - had even organised several weeks of meal deliveries to take the pressure off them.

Another friend set up a Givealittle page to help with the financial stress of being off work, organising a funeral and any other unexpected costs.

“The Givealittle page has just been crazy - it was something that we never expected,” Berg said.

A friend set up a Givealittle page to help Jenay Berg and Aaron Hilton with the financial stress...
A friend set up a Givealittle page to help Jenay Berg and Aaron Hilton with the financial stress of being off work, organising a funeral and any other unexpected costs. Photo: Supplied
The couple said they were taking each day as it comes and leaning on each other as they navigate their grief.

“Aaron is just my rock,” said Berg.

“I am in complete awe of Aaron, he’s been absolutely amazing.”

They said the silence in their home - which they had expected to be filled with Kyson’s noises and presence - had been one of the hardest things to bear.

“The house is really quiet now that everyone has gone,” said Berg.

“But we have two dogs, one of which is very young, and he keeps us on his toes - I think he’s been a really good help, just to keep us distracted.”

“We’re getting it through through it day by day.”

Berg and Hilton are desperate for answers about Kyson’s death and said not knowing what happened and why was torture.

“He was so healthy - and I was told throughout my whole pregnancy that he was so healthy, and he was so active. And if you’ve got an active baby, he’s a healthy baby.

“I also think it’s just really, really cruel - to get through this far, having IVF, and everything else and have it work, then to literally at the last second, when you’re really, really close that final stretch, to have it all taken away … that is very, very cruel.

“And especially when we don’t have a reason.”

Berg hoped sharing Kyson’s story might help other families going through a similar loss.

“This is something that no one should have to go through… Just remember you’re in it together,” she said.

“You’re both going through the same thing - you may grieve in different ways, but you’ve got to let that other person do it that way. You’re a team, don’t start fighting against each other… just take it day by day, minute by minute.

Berg and Hilton wanted to thank everyone who has donated to the Givealittle page.

As of last night, more than $9300 had been raised.

“Thank you to anyone and everyone who’s donated,” said Berg.

“We felt the love so, so much. I could have never imagined it would get as high as this.”

By Anna Leask