How could the birth of a new life, the time of life’s greatest possible personal triumph, also come to be remembered as the greatest trauma that the same person has ever endured?
The birth and unexpected death of a child must surely be the most poignant possible example of that.
A close second must be the birth of a child who is damaged or imperfect in some other way. But it is surely beyond belief that the tragedy of finding that this brand new gift is damaged is sometimes made unimaginably deeper when the people we look to for advice and help are unsympathetic and dismissive of our concern and pain.
Surviving infant surgery (the theme of this blog) sometimes means for new parents, “surviving the hard and closed minds of the medical world”.
There are several Facebook Groups that offer support to those affected by infant surgery, especially infant pyloric stenosis. PS is the condition responsible for the highest number of life-saving surgeries (operations) on babies. The great majority of “threads” (complaints, discussions and advice) on these Facebook sites relate to the unnecessarily long weeks before diagnosis, and to being treated very poorly by doctors.
Several mothers have posted about their unexpected and deeply frustrating experiences on their blog. Jenn Cahill is a British mother whose traumatic experience in getting recognition and treatment for her son’s PS helped her to start blogging about this and other challenges of pregnancy and new motherhood.
In a recent post, Pyloric stenosis, Jenn put on record her mother’s battle to have her (Jenn’s) PS taken seriously back in 1993, only to happen again a generation later! Jenn post chronicles the almost unbelievable story of her 2-3 week struggle in 2015 with dismissive medical staff before her son’s PS was taken seriously; by then his vital signs had deteriorated to the extent that it took several days to resuscitate him enough to withstand a relatively simple surgical procedure.
At the same time as she posted her story (early February 2016), Jenn participated in a spirited discussion of this issue on Facebook’s Pyloric Stenosis Support Group. (Note: this is one of several “closed Groups” dealing with issues around PS, “closed” meaning that Facebook subscribers can find each Group but not read and add their own material unless they join that Group.)
Here is the opening story to a P S Support Group thread – from a US mother, posted on 29 January 2016 –
Hello all, my son and I were struggling with feeding issues/lack of supply, so I had him checked for tongue tie. As it turned out, he did have posterior tongue tie, and he had his frenulum snipped at 2 weeks. His first feeding afterward, he threw up a large volume within minutes of each other. I called our ped in a panic and was told he overfed as he was finally able to suck effectively.
This began 7 weeks of misdiagnosis hell. He continued to throw up 1-5 times a day. Our ped diagnosed him with reflux. We tried different formulas, and he was put on prevacid. His vomiting wasn’t projectile, but forceful and huge in volume. The worst was when he was on enfamil AR – the formula was so thick that it was extremely difficult and painful when he vomited. I was so scared watching him during these episodes. We were at the ped nearly every day, getting nowhere.
Vomiting continued, and he was barely gaining weight. We went to a GI specialist at 4.5 weeks. At our first appointment, I asked if he could have PS and if we should do an ultrasound. My concerns were brushed off. The specialist diagnosed him with a milk protein allergy in addition to reflux – told me this was all normal baby stuff. My son’s health continued to decline. For an entire MONTH, we saw this doctor. I asked at every appointment if he had PS, shouldn’t we do an ultrasound. I was refused every time. Finally, at our last appointment I demanded one, which confirmed my son DID IN FACT have a severe case of PS. She fought his diagnosis all day, ordering the barium swallow test and ANOTHER ultrasound. Both of which confirmed PS. He had surgery the next day, after being hooked up to iv’s for 24 hours as he was extremely dehydrated.
He is now 7 months, thriving, healthy, so happy and sweet. Yet, I can’t get over what we went through. I can’t forget the pain and stress of it all… can’t stop punishing myself with the what ifs. I thought I was progressing, but today I had to write a letter of hardship as we’re applying for financial assistance with his many overwhelming medical bills. I had a total meltdown reliving that time.
Sorry for the long post. Just looking for support from PS parents. He is my first baby.
In a later frustrated response –
Made me question my instincts over and over. Made me feel like an utter failure as a mother. All the while my son’s health deteriorated with no end in sight. I’m so glad I finally demanded that ultrasound that day… I can’t imagine how much longer he would have suffered or what would have happened to him.
Another new mother added –
Funny you should post this as I’m up at 3 am reliving our 9 weeks of hell with exactly the same story as yours. The guilt and anger consume me at these times of night so I decided tonight that I am over the weekend going to make a formal complaint to the hospital as I want to ensure an investigation takes place so it doesn’t happen to someone else as new parents with a very ill newborn.
All I think we can do is console ourselves that we trusted our instincts eventually and we put our trust in the professionals which we should, but unfortunately their duty of care was sub-standard.
I’m glad your little one is now thriving, my little boy is also 7 months and doing really well but it has traumatised me and although it’s faded and I’m sure will more with time, I think these experiences will last with us for a long time.
And another mother wrote –
Thank you for reaching out to me – I’m sorry you also went through this. It’s so awful. I swear, I have PTSD. I suffered major anxiety/panic attacks the first month or so afterward. I felt okay for a bit, like I’d processed things and then out of nowhere, I’ll have a bad day like today. It’s also hard not to worry that every little thing is a result of the many weeks of unnecessary vomiting or fear for future health issues. I filed a complaint against the doctors with the Medical Board… who knows if they will be reprimanded, but at least I tried. And, wrote scathing yelp and google reviews. It’s sickening how negligent medical care can be.
Can we keep in touch if we ever need to talk or are having a rough day? I don’t feel like any family or friends can truly grasp how I feel or what we went through. The worst is the “just be thankful he’s healthy and thriving now.” As if I’m not or I don’t know that…
And she added –
Ugh, don’t get me started on insurance. I feel I’ve wasted half my son’s life on the phone dealing with them. Pretty much every single nap until the last couple weeks.
And another mother’s story in brief –
My story is exactly the same as yours except I was told reflux by 8 different doctors. And just treated like an “over anxious new mum”, told to go get some rest! Had to film my baby having a seizure which he would have every night from the pain and the choking before I could get just one doctor to listen! I’m still so angry.
There were many more contributions than those included here. I end this selection with another of Jenn Cahill’s responses –
Had exactly the same story as you with the main difference being I had PS as a newborn!!! And they still refused to diagnose him despite it being a much stronger risk if your mother has previously had it. Absolutely ridiculous.
I struggle to have faith in Doctors now as I think they’re trying to just brush me off as a silly mother as they did when he was tiny.
He’s 6 months now and yet I still panic if he throws up a large amount. And I’m terrified for the future as we are planning a second and I’m so scared we are going to go through it all again.
It needs to be added here that –
doctors are known to be busy and work long hours, usually covering a wide range of health issues: hardly a situation conducive to a sensitive listening ear;- many infant conditions are no doubt recognised quickly and dealt with well;
- several of the symptoms of PS are not unique to this condition, nor does PS always present the same way: correct diagnosis is of course essential and often takes some time; and
- despite doctors being as imperfect as ourselves, the death rate from infant PS has fallen from the majority a century ago to very low today (less than 1%).
Nevertheless, the medical world has some well-recognised problems, including some practitioners having a serious attitude problem and the number and nature of complaints about the way people are dealt with at what should be one of the most beautifully memorable times of their lives.
Stories from the Survivors of early Surgery 