Lucas's Story

Lucas was a very wanted baby. I put this in because during reading this story you may begin to ask that question? But he was wanted. I had wanted children ever since I can remember, and working with them only increased this urge, but I waited for years, as I wanted to be a stay at home mum. We tried for a baby for eight months after my husband finally became enthusiastic about the idea, and it was eight months too long, but eventually on the 25th day of July in 1997, Lucas was born.

When Lucas was two days old, he began screaming, I tried to soothe him, to feed him, to rock him but nothing worked. He screamed for four hours straight, then on and off again all day. "Breastfeeding problems," they said, "You'll get the hang of it," they said. On the third day he began screaming at 12.36am and he was still screaming when we left the hospital at 9am, "You'll be fine," they said; I left in tears.

On the forth day my Maternal & Child Health Nurse visited. "You need to relax," she said. Lucas continued to scream. On the fifth day the visiting nurse told me that all babies cried! "But he's screaming," I protested; "There's something wrong." "You're doing fine," she said. On the sixth day I went to my doctor, "All babies cry," he said; "Try to get some sleep." When I protested that Lucas only slept in 30-minute cycles and only 7 of them in 24 hours, he said; "That is normal, it will get better." It didn't!

On the 10th day when I complained to my maternal Health sister that I was exhausted, she told me to stop running around, that Lucas wasn't putting on weight, and that I had to accept that I couldn't do everything now that I had a baby. You are starving your baby. It's your fault he is not putting on weight, " she said. I left in tears.

On the 11th day my mum came and sent me away to do the shopping. "You need a break," she said; "Off you go." I returned two hours later to find her in tears. "Something is wrong with your baby," she said as I opened the door, and I was overcome with relief, someone finally believed me!

The next day I took Lucas to the hospital and colic was diagnosed. I was given a pamphlet on ways to soothe a Colic baby, warm baths etc, and I was sent home. Lucas got a cold and three days later I returned to the hospital and as he had stopped breathing, he was admitted for bronchiolitis. The doctors checked him out before I left and were explaining what to look out for in regards to his breathing. "But I'm not worried about his breathing," I cried; "He won't stop screaming." "It's colic," they said; "It's nothing to worry about!" They were wrong!

On the 20th day I went to Maternal & Child Health Sister, "You need to stop breastfeeding," she said. "He's not putting on weight; he needs formula to get his weight up." "No," I protested; "I want to breastfeed." "You can't," she said, "Your milk's no good!" I left utterly devastated.

I rang the Women's hospital in tears and due to a cancellation got in the next day to their one-day breastfeeding unit. "He's a high needs baby," they said, "He's got behavioural problems." "Try Queen Elizabeth." At four weeks I went to the Queen Elizabeth baby unit and by cutting down how much I fed Lucas, we had a slight improvement. It only lasted a week, but they gave me back something that I lost the moment my son started screaming, a belief in myself as a person, and as a mother.

A week later I returned to the doctors and demanded a referral to a paediatrician. The paediatrician saw me three times and began Lucas on Prepulsid and Mylanta, when it didn't work he said that Lucas couldn't have a condition known as silent reflux. He was wrong. He also instructed me to stop breastfeeding. "Formula often works wonders," he said.

At seven weeks of age Lucas began screaming at 3.30 am and didn't stop. He didn't feed, he didn't sleep, he just screamed and wouldn't stop. Fourteen hours later my paediatrician rang to tell me the blood, urine and faeces test had come back fine, that I was lucky to have a beautiful healthy little boy. I explained that Lucas had been screaming for fourteen hours straight. He replied that motherhood was hard and that I should count myself lucky, etc. I hung up on him. Lucas continued to scream and then about ten o'clock something changed, Lucas stopped moving, apart from his voice, you wouldn't have known he was alive, and I became afraid, I felt he was dying!

I rushed Lucas to the local hospital, where after waiting for two hours they diagnosed a sore throat and sent me home. I begged them in tears to keep him, pleaded with them saying that I didn't know what I would do if they sent him home with me again. They asked me to leave.

But then I realized that the only one that was going to help Lucas was me. I drove onto the Children's determined for a fight. I wanted my child admitted, and I would drive all over Victoria if I had too! But I didn't have too. Lucas was admitted within five minutes of me walking through the Emergency Room entrance. " He's very sick," they said. "We'll do everything we can," they said; "The next 24 hours is critical," they said. The doctors went onto discuss whether Lucas should be placed immediately into an intensive care unit, and decided instead to hold off for twenty-four hours in an attempt, to halt his obvious deterioration. They then began a cocktail of treatments until Lucas stabilized at the twenty-three hour mark. Lucas remained at the hospital for the following week, whilst they went onto to diagnose a condition known as silent reflux, and associated problems with the digestive tract.

Lucas from that day on lived on Zantac, Prepulsid, and Panadol, and was sedated daily. The drug levels where so high that my local chemist refused to give me the drugs even after ringing the hospital, because he didn't want to be liable for what happened. However on those drugs Lucas begun to improve, although he had continual colds and broncholitis, until 5 months of age, when his condition began to deteriorate, and once again he began refusing to feed. But this time I was prepared. I had lost my innocence, I didn't believe in the medical profession anymore. I went to the Monash Medical Library and researched the digestive system, reflux, associated disorders and medication. I scanned the Internet and I learnt, not everything, but enough. So when I returned to the Children's and they offered me a drug called phenobartitone, I knew enough to say no. Enough to demand to see a pediatric gastroenterologist, enough to demand a gastro scope. When I was refused, I walked out of the Children's and rang the airport. The pediatrician we where dealing with was well respected, and I was concerned that another doctor would be hesitant to contradict him, so desperate for an unbiased second opinion, I flew to Brisbane. Three days later thanks to a caring GP called Jack, my son was seen by a pediatric gastroenterologist in Brisbane and scoped, thus enabling him to be placed on a drug called LOSEC. My son had severe life-threatening oesophagitis, due to the silent reflux being improperly managed, and the pediatric gastroenterologist was not backward in saying what he thought about the treatment my son had received. "Lucas is very lucky you came," he said. "Lucas couldn't have lasted much longer," he said." I haven't seen phenobarbitone prescribed in over ten years," he said. .

We returned to Melbourne and continued to see a paediatric gastroenterologist down here, who ironically is not only renowned for his ongoing research into distressed babies, but who also shared the same office space with the Pediatrician we were dealing with. Under his care Lucas has begun to thrive and is now a beautiful, confident 22-month-old who loves his mum, his dad and his dog. He has also gone onto have milk protein Intolerance diagnosed, and, Yes, luckily I ignored the doctors and am still breastfeeding, which I was later told by a paediatrician, is the best for these babies. "A baby that has colic or reflux has an immature digestive system. You don't give a baby with an immature digestive system something that is twice as hard to digest, and takes twice as long," he said.

But I haven't mentioned the reasons behind the writing of this story; I haven't mentioned the despair I felt in not being able to comfort my child. I haven't mentioned the frustration I felt at my own inability to sooth my child's screams. I haven't talked about what it was like to hold my son in a bath for up to five hours at a time, as it was the only thing that seemed to work, or about those times I placed him in his cot and cried with self pity and shame for not coping better. I haven't talked about what it's like to be angry at your child, for not being like other babies, and how ashamed this makes you feel.

I haven't mentioned the countless times that I rang my husband in tears, begging him to come home, because I didn't know how I was going to make it through the next two hours, let alone the next two days. I haven't talked about how angry I was at him, at everyone for not understanding what I was going through, or the effect this had on our marriage, and how close I came to being a single mum. I haven't talked about what it feels like when no one believes you. I haven't mentioned how inadequate and ashamed the doctors made me feel, how my pleas for help, where often meet with insinuations about my ability to cope, my inability to relax, or my lack of parenting skills. How being a first time mother became a reason to many in the medical profession for my child's distress.

I haven't talked about what it is like to live for months on four hours sleep, made up of eight lots of 30minutes, and the desperation that it brings, and how that takes over your life preventing you from enjoying your child. Or how I went to the doctors in tears convinced I had postnatal depression, and finally collapsed at ten months from physical exhaustion, on the verge of a complete breakdown. How I was confined to complete bed rest for two weeks and my husband was forced to take time off work to care for our son.

I haven't talked about the self control it takes to hold a screaming child in your arms, for twenty-four hours a day, day in day out, washing, eating, dressing with, until you finally fall asleep while he screams in your arms. Or about the fear, that haunts your soul, that something is seriously wrong, that this nightmare would never end. The fear that I'm left with, at the thought of having other children, of having to live through this again. How for the first time in my life I felt totally alone.

But probably worst of all was the guilt, the guilt that comes from knowing that your child is in pain and your inability to do anything about it, the guilt I still feel today when I think of the months of unnecessary pain he had to endure. This is probably why I at Don Cameron's suggestion decided to join DISA, to prevent other children from suffering needlessly, and to stop the misinformation. At DISA I found many mothers of colic, food intolerance and reflux, whom had gone through similar experiences, and I was no longer alone. With DISAs support I used my research for Lucas to help rewrite their information kit and help put together an informative Internet site for parents. I learnt six months too late, that you don't have to live with a screaming baby, and that they have a right not to be in pain. Colic, Reflux and Food Intolerance and other causes of distress are treatable manageable conditions, and there are specialists out there who know how to help! Dr Don Cameron at the Royal Children's and Monash is one, who I will be eternally grateful to. He silenced the screams, and gave my son his smile back.

My son is approaching 3 years old now and is bright, cheeky, and full of laughter and smiles. The only reminders of his traumatic past, is a tendency to be clingy, a short fuse, and a obvious fear of going to sleep, or of being sick. He brings so much joy into my life, he is my sunshine. He deserved better, we all do.

So now I work for D.I.S.A, which is a voluntary organization, committed to supporting parents of distressed infants whether they are colic, food intolerant, reflux, or simply fussy babies. They make information on causes and treatments easily accessible and attempt to help before it becomes too late, before mothers begin to shake to their babies out of sheer desperation, and hopefully before mothers become depressed and have breakdowns. D.I.S.A. is about support, information, and the prevention of child abuse and postnatal depression.

To my son, I don't know how you did it, but survive you did, and my life will always be the richer because of your presence.