3 under 3

How can this have happened?

Posted on: May 11, 2011

Imagine you have had your third baby. He is beautiful, perfect, just like his brothers. You breastfeed your baby boy, and he grows quickly, adding a kilo to his birth weight in just three weeks. He is healthy and happy. He smiles, goos and gurgles away as he approaches two months of age. His only issue is vomiting after feeds, but you know this is quite normal for small babies. You treat his ‘reflux’ by burping him after each feed, and elevating his head when he sleeps in his bassinette. But the reflux slowly gets worse. You decide to see a doctor, because you think it can’t be good for him to be vomiting so much. The doctor sees your baby, who is still generally very happy and healthy, apart from the vomiting, and a cold. He diagnoses bronchiolitis, a respiratory ailment often brought on by a cold virus. You accept the diagnosis, even though it doesn’t sit right with you – he does have a cold, and he may even have bronchiolitis, too, but the vomiting does not seem to be associated with coughing. You wait another week or so. The vomiting has continued to worsen, and now your poor little baby is starting to look unwell. His colour is just not right, and his growth has slowed down. You go to a different doctor. Living in regional NSW, there aren’t a lot of doctors to choose from, but you do find one and you tell him your concerns. This doctor diagnoses bronchiolitis again, as well as mild reflux. You are told to keep doing what you’re doing. You protest that what you’re doing isn’t working and you think it may be more serious than simple reflux – he is projectile vomiting after every feed. He is not gaining weight anymore. This isn’t right. Your cousin had a stomach condition as a baby, called Pyloric Stenosis. Could this be the same? The doctor shakes his head. He doesn’t say it, but it is clear he thinks you are overreacting. You take your baby home, knowing deep down that something is wrong with him, but doubting your instincts because you have been put in your place by someone who tells you they know better. Again, you wait. But your baby is not well. You take him to the hospital and explain the whole story all over again. They send you home. He has reflux. Soon you notice that your baby is actually losing weight. You know this is very bad news. Your baby still smiles and goos and gaas at you, but he’s more irritable and upset than is normal for him. His nappies are not as wet as they should be. His poos are black. You suspect he is becoming dehydrated. You take him to another doctor. He listens to you. He can’t believe you haven’t been referred to a paediatrician already. He agrees that your baby shouldn’t be losing weight. He sends you home with reflux medication to try for a week. If this doesn’t work he will send you to a paediatrician. You feel relieved that someone has finally listened. But you still think it’s not reflux. After three more days, your baby is still projectile vomiting. You wonder how he can possibly hold medicine down when he can’t even hold his milk down? You are deeply worried about him. You muster the courage to face the doctors at the hospital again. You know they think you are just another overprotective mother. You try to believe it yourself. But that nagging feeling, that there is something seriously wrong with your baby, just won’t go away. You take him to the hospital again. You insist that this is not reflux. You argue that you want tests done for Pyloric Stenosis. They send you home once again, with no investigations or treatment, but with a referral to see a paediatrician in two days’ time. The next morning, your baby is listless and wailing in pain. He has not had any wet nappies in 24 hours. You are at your parents’ house. Your Mum is also deeply worried about him. She drives you and your baby back to the hospital. “This time”, she says, “We are not leaving until you test him.” You and your husband agree that if they send you home again, you will drive your baby to a hospital in Sydney and insist on tests there. Finally, they listen. Finally, they give your baby more than a passing glance. He is clearly a sick little boy. They admit him into the children’s ward. It is no surprise to you when they declare him dehydrated and in urgent need of intravenous fluids. It is no surprise to you when an ultrasound reveals a blockage in the base of his stomach. Pyloric Stenosis; a condition that develops in babies between three and five weeks of age, where the lining at the base of the stomach continues to grow and thicken, restricting (and eventually blocking) the flow of milk into the intestines. Your baby needs surgery. It can’t be done at your local hospital: they find you a bed at Westmead Children’s Hospital (WCH) and prepare you to be transferred first thing in the morning. However, in the morning, there is another problem. The admissions department at WCH won’t accept the diagnosis. They want the tests to be done again before they will agree to admit your baby. Your local hospital re-runs the tests. You are very frustrated – all of this is taking up precious time. You are no longer allowed to feed your baby. He is upset and in need of comfort, but all you can do is hold him and rock him. He needs surgery to get better, but you are still waiting. Later that day, WCH is still not happy with the second round of tests. They agree to have you and your baby transferred, but will not admit you directly: you will have to start the entire process again through the emergency department. You are incredulous that the children’s hospital will not admit a 10-week-old baby, who is on a drip because he simply can’t feed properly. You are so tired of the whole ordeal. But you have no choice. You and your baby are transferred by ambulance, and arrive at WCH at midnight. Your husband takes your two other children to stay with family who live nearby, before joining you in the emergency department to start all over again. At 3am you see a surgeon. He quickly agrees with the diagnosis of Pyloric Stenosis, and puts your baby on the urgent list for surgery in the morning. He is appalled at the treatment you have received at every turn. He informs you that babies with PS usually do not live as long as your baby has. The condition is usually picked up within a week of its onset, and after surgery, most babies have fully recovered within two weeks. He tells you that your baby’s recovery may be prolonged, because he has been suffering for so long. During the rest of your stay at WCH, the treatment you receive from doctors, nurses and staff is exemplary, reminding you of how simple the whole process could have been. Seeing other sick children makes you feel grateful that your baby has something that can easily be ‘fixed’. Some families are not so lucky. The surgery goes well. Your baby does suffer from some discomfort afterwards, but he tries his best to be his normal, happy self. You are allowed to start feeding your baby small amounts of expressed breast milk later that night. It takes a day before he starts to keep the feeds down. With some milk in his belly at last, he instantly starts to look better. Soon, you are allowed to offer him the breast. You rejoice in his enthusiasm as he latches on. He feeds as though he never wants to be parted from you again. The feeling is mutual. You are relieved when your baby is discharged from hospital just days after the surgery. You and your little family return home together, where your baby continues his journey towards health and happiness once again. You are grateful to have your baby at home, recovering, but you are still frustrated and saddened. Your baby should not have been turned away all of those times. During your stay at the hospital, you learnt, from a nurse, that the black poos your baby was producing are a symptom of starvation. You burst into tears on hearing this. Your baby was starving, and no-one paid any attention until it was nearly too late.

There are so many things wrong with this story. I’ll outline just a few: why, when we have the money and resources available at our fingertips, is our health system so completely screwed* up? (*I want to use a stronger word, but will refrain). How can mothers be dismissed and ignored so easily? What would have happened if the mother involved had not had access to the resources that enabled her to (eventually) be heard?

I don’t have the information to answer the first question, except for a little insider knowledge that has come from someone I know who works in the health system. She works in mental health, and she sees cases like this all the time, where paperwork is more important than actually spending time with, and talking directly to, the client. If the paperwork isn’t filled out, you are prone to litigation. Everyone is so busy filling in paperwork, they don’t have time to do their actual job, which is to assess, treat and follow up with clients. Also, I have a feeling that this is all tied up with funding. I’m sure hospitals have to justify every single test they run, investigation they start (probably with mountains of paperwork), in order to satisfy budget restraints. So they don’t want to do anything unless it’s truly necessary. But, in this case, the warning signs were all there. Why did no-one listen?

Which brings me to my second point. Why do we have to constantly struggle against this ‘overprotective mother’ image? Why can’t we be respected as concerned parents and care-givers, as one of the people who know our child best? It took immense courage for the mother in this story to continually seek help, even though she was made to feel stupid for her concern. I’ve been there, myself. Whilst pregnant with my first, I had symptoms of a serious illness, but was turned away and made to feel like an idiot. I put up with the worsening symptoms for three more weeks before my body began to let it be known that something was very wrong. My baby and I were both put at risk because a doctor did not take me seriously. Why does this happen over and over again? Is it simply another symptom of a patriarchal system, in which all power is placed in the hands of the professional, whilst mothers, unpaid and undervalued, are assumed to know nothing? My mother put it best, in a discussion we once had on this issue: Munchausen’s by proxy is rare, yet every mother is assumed to have this syndrome, until proven otherwise.

My last point is to do with social and cultural capital. The mother in this story has some privileges, which helped her to eventually demand the help she needed. She has a supportive family network to draw strength from, and to help in caring for her two other children while she tried to get help for her baby. She and her partner have their own transport and enough money to be able to get their baby to Sydney if necessary. She is white, and had the necessary language skills to express her concerns (even if they weren’t listened to at first). Now imagine she was a migrant, with little money, or family support network. Imagine she didn’t speak English well – it is hard enough to express concern for a child, without appearing too emotional (because that earns an immediate dismissal), when you are speaking in your own tongue, let alone trying to do it in another language. Or, imagine this mother was Aboriginal or Torres Strait Islander – imagine the extreme anxiety that fronting up to an institution with her tiny baby, seeking help, but not knowing what might happen, may have caused her.

This is so wrong. On many levels. Luckily, this story ended well. But I wonder how many others have not? It’s not over, either. The mother involved, and her family, have registered a complaint to NSW Health, and I congratulate and support them in this.

Perhaps the hardest thing about this, for me personally, was visiting this tiny baby in hospital the day after his surgery. I had been involved in the saga, but had not actually seen him until this day. He looked sick, even though he was already much improved, due to the IV fluids he’d been on for days. But sick is sick. He’s a tiny baby. How could anyone turn away a tiny, sick baby and his frightened mother? How could this have happened?

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7 Responses to "How can this have happened?"

Thanks for writing up this sorry story. The lengthy, insensitive and patronising process you describe here happens so often with Pyloric Stenosis babies and their parents, who have posted countless similar accounts. I’m blogging about this and other issues around infant PS and trust it will be ok to post a link to your post?
Fred Vanderbom

Great, great post Anna. I totally agree with the social aspect of this. The emotion would heighten when you simply could not be understood so had no other way to communicate your concern. But still so angry that this family had to deal with this. Wish them well in their complaint. It needs to be done.

Stop making me cry Anna

So true Nicole.

Sorry guys 🙂

[…] full account is worth reading; it is both infuriating and heart-rending and may be found at https://3under3tmn.wordpress.com/2011/05/11/how-can-this-have-happened/  Let me highlight the main points […]

[…] I recently wrote about a family member’s struggle with Pyloric Stenosis, here. PS is a condition that develops in infants, in which the muscle lining the exit from the stomach […]

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