baby

'When my son was born, I knew that something wasn't right. No one believed me.'

Birth: there's nothing quite like it, and it's clear no two birth stories are the same. Which is why we're asking everyday women and some of our favourite celebrity mums to share theirs, in Mamamia's My  Birth Story series.

This week we profile Jess from Berwick in Victoria, who is a mum of five including four-year-old son Daniel. Jess' story goes beyond the birth and into what happened when her son Daniel experienced significant delays in the months after he was born.

Jess met her husband Wayne 21 years ago at church when they were both in their teens. 

They tried for three years to conceive and suffered two miscarriages before having their eldest son in 2004, followed by another son and then a daughter. 

"We had our daughter Felicity in 2013 and felt that our family was complete," Jess says.

"The pregnancy had been very hard on me physically and emotionally. She wasn’t breathing properly at birth, and although she was okay after medical assistance, I felt that the whole experience was traumatic. 

"But then I fell pregnant with Daniel in 2016." 

After going through a difficult birth with Felicity, Jess wanted a caesarean. 

"I’d felt so out of control with my last labour that it traumatised me and I refused to have that happen again. I had a lot of pressure to give birth naturally, but thankfully my initial obstetrician provided good guidance." 

Watch: The things you weren't told before you gave birth. Post continues below.


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This final pregnancy was really tough for Jess, already a mum of four children all diagnosed with a range of complex additional needs.

"I spent a good deal of my pregnancy crying on the floor of my running shower. I had no idea how I’d cope with another child. I didn’t know where we’d even put the new baby and I just felt completely overwhelmed and worried."

At 37 weeks, Jess was admitted to hospital because of high blood pressure and signs of pre-eclampsia. 

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"The medical team decided to do a caesarean at 37+ 1 weeks as they had worries about my health and baby's health. They gave me a steroid injection to help ready his lungs for birth and it felt very surreal sitting on the hospital bed waiting to be called to theatre. 

"I was in overnight prior to the op, and I remember just sitting cross-legged on the bed, looking down at my bump and watching him move about. 

"I kept thinking that ready or not, I’d meet him very soon. And while I knew I’d love him, I worried I wouldn’t be able to cope, and I felt guilty because there was so much stress and turmoil at home due to meltdowns and fighting between my four older kids. 

"The kids were excited to meet him but I worried how they’d cope with a crying baby and my attention further divided."

When the time came for the caesarean and they wheeled Jess into theatre, she was anxious, but outwardly calm. Wayne was by her side, holding her hand and providing reassurance. 

"I remember feeling vulnerable, and very self-conscious. I’ve never been comfortable in my body and having several people see me half naked was highly stressful. Once the surgery began, I could feel the incision but without pain. Just a warm pressure spreading across my abdomen which I assume was blood. 

"Then I felt them rummaging about in my stomach, and it was such an odd feeling. When they pulled him out and lifted him up, I remember he looked a lot grottier than my other babies, but I burst into tears because I immediately fell in love. 

"They took him to clean him and I remember him crying a high-pitched cry, very different to my others. I couldn’t see much of him while the nurses weighed him and did his Apgar assessment and I desperately wanted to hold him. 

"I’d opted earlier to have my tubes tied after delivery, so Wayne and Daniel were taken into a separate room just outside the theatre. They whole time I could hear him crying uncontrollably and I felt really unsettled because it didn’t seem normal. I knew Wayne had him and he was very good at settling our kids as babies, but Daniel just cried hysterically."

Listen: The surprising birth story of Fiona Falkiner. Post continues below.

 

Once Jess was finished in theatre, she was wheeled to recovery where a stressed Wayne was holding their screaming baby. 

"He was placed on my chest for skin to skin contact and I tried to comfort him but he jerked back and forth across my chest, wailing. 

"Once on the breast, he seemed voraciously hungry and settled a bit, but it didn’t last long."

The first 48 hours in hospital are a blur Jess recalls, as Daniel cried 'almost endlessly'. She says that the only rest she got was when they took him to the special care nursery to run some tests because the medical team were concerned by how distressed he was. 

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They couldn’t pinpoint anything, so after two days Jess and baby Daniel went home.

The first seven weeks were tough, and Jess says that Daniel hardly slept. 

"He screamed a high-pitched cry most of the time, wanted to feed constantly, and wanted to be held. He was the most unsettled baby we’d ever had, and our confidence as parents took a beating."

At around seven weeks old, Daniel smiled, and from there Jess says he seemed to improve mood wise. He still fed voraciously and frequently, he still hardly slept, and he still cried a lot, but he became easier to cheer up. 

"As the months progressed, he seemed almost ridiculously happy. You’d talk to him and he’d laugh hysterically. You’d sneeze, and he’d laugh like a madman. Everything seemed to make him laugh wildly. At first it was cute, then it was stressful. He’d even laugh when in pain, like during immunisations!" 

Baby Daniel. Image: Supplied. 

Jess recalls how Daniel wasn’t developing any of the usual skills for kids his age. He couldn’t roll, sit or crawl by six months. At five months old, they decided to take him to see a physio who wrote a report noting significant delays and symptoms of suspected cerebral palsy. Jess was devastated.

"I had a breakdown. I became mentally unwell and was in a horrible depression. I thought I wouldn’t cope with a fifth child, but learning that he might have additional needs even more significant than my other kids sent me over the edge."

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Jess was referred to a mother and baby in-patients unit specialising in psychiatric illness in the post-natal period.

"I went there because I was severely depressed and overwhelmed, but my concerns about Daniel's delays and size were discarded.

"Eventually the medical team told me that there was no evidence of his delays being caused by anything notable, and that they felt that he was delayed due to parental neglect on my behalf. They said they knew I didn’t mean to neglect him, but I just had too much on my plate and I couldn’t stimulate or provide him with the care he needed to develop."

Jess tried to defend herself and tell them that she knew something was off. 

"I wasn’t a first time mum, he was my fifth child, and something was wrong. They didn’t think so. 

"I wasn’t allowed out with Daniel. I had to provide ritualised and observed exercises with him to encourage him sitting and rolling three times a day. The nurses had to watch me and mark it off. I was originally admitted for a two-week stay, but I was there for six weeks, accused of neglect, and placed on a strict roster where I was not allowed to be left alone to care for Daniel."

The Department of Human Services also became involved, visiting Jess' family and her children’s schools.

"I was talked about and my perceived neglect was honed in on, even though I strongly (as did my family and friends) stated that I’d never neglect my kids. 

"I had gone for help, but left feeling absolutely debased and hopeless. I felt like a criminal, a child abuser, and I was so fragile. I lost my confidence in my ability to make choices as a mother. I thought I was doing an okay job, but they were all saying not only was I doing a poor job, but that I was the cause of my baby’s delays." 

Jess eventually got an appointment with her other children’s paediatrician. 

"He was a stoic, older gentleman. He told me matter-of-factly, 'Anyone who knows you, knows you’re a very good mother!' He then examined Daniel. He moved him about, dangled items out of his reach, and gently poked and stroked him to gauge his reflexes. 

"I watched his serious face grow creased with concern as he did these things, and then he said, 'There’s definitely something not right here.'"

Daniel was sent for extensive tests that revealed a rare genetic condition on the 15th chromosome known as Angelman syndrome. Signs of Angelman syndrome include problems with movement, lack of crawling, walking and poor coordination, a lack of speech, severe to profound physical and mental disability, excessive laughter, seizures, and a happy demeanour.

Wayne and Daniel. Image: Supplied. 

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Jess contacted the Department of Human Services immediately to tell them about Daniel's diagnosis.

"They said they were closing my case as Daniel's delays were 'caused by disability'. 

"That was it. No, 'We are so sorry we treated you like an abuser and neglectful parent', or, 'We are sorry we ignored you, and embarrassed you by involving family and school in your business and telling them you were incompetent'. 

"No apologies. Just case closed. 

"I wish I could say I revelled in my vindication. But I was heartbroken and devastated. My baby’s condition was far worse than I ever imagined. And it was incurable. The grief was heavy, but there was a determination and strength that was born amid that crushing grief. 

"I knew my child best. My maternal instincts were right, and I refused to give up or give in to my grief or to bitterness."

Fast forward four years and living with Daniel and his rare condition is very challenging for Jess, Wayne and the family, especially after he developed epilepsy. 

"His sleep is still a big issue although helped somewhat by sleep meds. His delays are extensive. At almost five years old, he still can’t crawl, bear weight, or sit himself up without help. 

"He wiggles around on his back. He is a big boy, (weighing) 37kg. He doesn’t hold on when you lift him so Wayne and I have hurt ourselves several times. He also has traits of Prader-Willi syndrome, which is the 'sister syndrome' to Angelman, which means he is constantly hungry, and will eat almost anything, including paint, chalk, and plastic.

Daniel needs constant supervision. He will never talk, may never walk, and will never reach mental maturity beyond two to three years of age. 

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Daniel. Image: Supplied. 

"We’ve had to let go of a lot of our dreams for the future. Of owning a home, of travelling. Of him growing up, having a family, and living independently.

"We have grieved hard, and sometimes, like a wave, a fresh smack of grief hits you when you least expect it. We live with guilt. Guilt because he takes up so much of our time, and so much of our mental and physical resources that sometimes our older kids miss out. 

"I worry constantly I’m not doing enough. I’m not a therapist, but he needs me to be. And I fall short. We live with prejudices, rejections, and exclusions. 

"We do our best, Wayne and I. We make it work the best we can. And we adore him. He is without a doubt, the most challenging and wonderful thing that ever happened to our family. We, including our other children, are better humans for having him in our lives."

Jess Eastaugh is a writer and you can find out more about her and her family in her Facebook group 'Jess Keeping it Real.'

From November 7 to November 13, Perinatal Mental Health Week is a time to raise awareness about perinatal depression and anxiety. To find out more visit https://pmhweek.org.au/.

If you have an amazing birth story to share, let us know by emailing a couple of short sentences to: [email protected] and including 'My Birth Story' in the subject line. We will then send you a Google Form to complete.

Feature Image: Getty.