My fiancée and I have twin boys. One of them, Jaxson, was born with multiple severe medical conditions. He’s only 12 months old and has already been through three heart surgeries, a tracheostomy, a colostomy, and has a feeding tube that goes directly into his small intestine. He’s been fighting to live since the day he was born.
We were told that Franciscan Children’s Hospital in Brighton, MA was the best place for long-term recovery care. But what happened there has left us shaken. We watched our son go from stable to neglected, and it felt like no one cared.
Here’s just some of what we experienced:
• Staff changed his trach and ventilator settings without telling us. They didn’t document any of it
• His safe suction depth is 11.5 cm. Nurses admitted to going beyond 12.5 cm
• His suction tubing was never changed. When we checked it, it was full of mucus and mold
• Alarms were going off while he was gurgling and struggling to breathe. No one responded. We had to step in ourselves
• He was given extra doses of Ativan with no clear medical reason and became completely lifeless
• His feeding tube was placed wrong and clearly caused pain
• When he was transferred back to Boston Children’s Hospital, their team was shocked. He was dehydrated, had dried blood around his trach and ears, and several records were missing or inconsistent
Trying to get his records from Franciscan was a nightmare. We kept getting vague responses and delays, like they were trying to cover something up.
All of this happened while we were also trying to care for Jaxson’s twin brother, Jayden, at home in Manchester. We were running on empty, bouncing between two kids who both needed us in different ways, trying not to fall apart. We still are.
We’ve filed complaints. We’ve talked to administrators. Nothing has come of it. So now we’re speaking publicly and reaching out to anyone who will listen.
If you’ve gone through something like this, or know someone who has, or just believe children deserve better, please speak up. Share this. Point us toward someone who can help.
Jaxson didn’t deserve this. No child does.
Comments
I’m so sorry you have had to go through this. Have you spoken to an attorney about suing them for malpractice, abuse and neglect? I know you’re in MA but, Cincinnati Children’s Hospital is the best in the world. If your son’s health declines, I would try to see if you could get him in there. I think there are charities who offer free or reduced price housing accommodations near there for families with a child in the hospital.
Yeah OP I’d go to a lawyer subreddit or something like that. See what you can do, money talks and you can hit em where it hurts. The lawyers will give you an idea of what you will need and if you have a case
Lawyer up! Big time …like a huge lawyer not a new one
My heart breaks for you all. Big hugs to you and yours and especially your precious child.
FIGHT.
I am so sorry you and Jaxson went through that! I’m not an attorney, or a doctor, but I wish I was able to help. I will say a prayer for your family🩷
Sue them!
Please, please, get an attorney! They absolutely deserve to be served and charged in every way they possible can be.
From someone with health issues who didn’t used to speak up, speak up when you don’t agree with something, have questions, or notice something off. Document everything. Don’t be afraid to fire your health care provider. They work for us! There are too many people getting into healthcare jobs strictly for money, and they flat out don’t care about patients. It’s sad and pathetic.
I am so sorry for what your little one has gone through. I am sending the best vibes of healing your way and hoping he’s on a better road to recovery soon.
If it comes to it, the Cleveland Clinic has the Ronald McDonald house for parents and children needing specialized care. I think they either fully cover or help cover your stay there so you’re not dishing out more money for a hotel room and it’s right there with the clinic.
I’m so sorry you are having to go through all of this. I work on the healthcare administration side and while you’ve filed complaints where you can, I’d also recommend filing complaints against the physicians and nurses, respiratory therapists with their respective licensure boards.
At least in the state I live we cannot employ physicians and so disciplinary action doesn’t look like “firing” it looks like not letting them practice at your hospital/for your health system. However, the licensing board CAN sanction against their license.
You can look up any licensed healthcare provider on the state specific website. In general you’ll only need their first and last name. This info is public.
You can google “medical license verification lookup in”
The license look up will also show if the provider has had any historical sanction actions taken against their license. It may not solve your situation faster but it will apply pressure since (generally) the licensing boards will conduct their own investigation.
Best of luck and I hope your baby boy continues to beat the odds.
Please talk to an attorney. Your child has suffered, someone else’s child may die. It’s not your responsibility to try to save the world, just your own baby and I know you have so much in your plate. Hand this over to a pro. Prayers for your sweet babes.
Go to the media, that’s horrific. I’ve got special needs kiddos and developed ptsd myself from an extended hospital stay with my child. Your little boy deserved better, did you report the hospital to PALs?
I’m so sorry you had to go through that. No one should have to watch that happen to their infant. I hope you are able to hire a good lawyer and sue them for malpractice. I’m sure the 2nd hospital would write up a report about how his condition was when they received him. Sending hugs!
God this infuriates me for you. This shit has been happening for decades and nothing is ever done. My brother was born in 2001 and was improperly intubated as a newborn (to this day my parents don’t know why they even intubated him in the first place) which caused so much scarring he needed a trach for years. When my parents tried to pursue malpractice the lawyer told them that it wasn’t worth it because in order to get something like that going we would’ve needed another medical professional that was there to acknowledge that they did something wrong. No staff would turn on each other and admit it so my brother who still can’t breathe right 23 years later never got any sort of compensation. I sincerely hope you are able to get something done. I get people are human, but when you mistreat a patient or alter someone’s quality of life forever….. my god the least they could do is admit it.
Edit: forgot to mention that my brothers heart was beating too fast so he was on amiodarone to slow his heart rate. Can’t remember the exact dose but basically the nurse tried to give my brother over triple his regular dose and wouldn’t stop until my mom physically threw herself over him to stop her. Nurse went to the doctor and guess what, she came back and my mom was right. They literally would have 10000% killed him and never even said a simple I’m sorry. Sorry this is long I just can’t believe it’s 2025 and hospitals are still letting this shit slide.
Lawyer up.
I am so sorry. I hope he gets as stable as possible and recovers from his time there.
While you’re filing complaints, do not forget about telling the insurance company that you guys have. They might also be able to get your baby’s medical records along with itemized invoice of his stay, which would tell you what medications, tests, procedures, and maybe treatments they did. Those could be matched against his medical records to verify what was done.
I’m so deeply sorry you and your family are going through this. I’m sending all my prayers 🙏 I’m sorry I can’t be of any help as I’m from the UK but you’ll be in my thoughts
I sent you a DM. Please contact the Joint Commission and MA department of health to file complaints. Especially the Joint Commission. They will absolutely follow up regarding these issues, especially if you submit a letter with this level of detail. I am a nurse and have worked in a leadership position for multiple hospitals and have had to spend months addressing and investigating concerns that are a fraction of this level of negligence.
So I have a MD and a JD, and have a lot of experience with issues like this. That said, I am not currently a licensed attorney and am not giving you specific legal advice
I can understand why you are having trouble getting a malpractice attorney. They work by taking all costs up front, and only get paid if you get a large settlement or verdict. That usually takes several years for these cases to play out, and they will often front over $100,000. They can only gamble on cases that have high damages.
The “problem” with your case in their eyes would be there there are a lot of monetary damages. You cannot recover for pain and suffering alone, they have to be associated with other monetary damage. You just don’t have that, at least not in what you wrote. That is what they mean about permanent outcomes.
That doesn’t mean you can’t do everything. Rehab facilities are licensed and periodically inspected by the state. I sounds like they violated several important issues in his care, leading to harm to him. Share your concerns with them, the more detailed the better. For one, they are NOT allowed to deny you access to your medical records. That is really fishy.
If you know of individual nurses or doctors, you can also report them to their licensing board. This should prompt at least a little bit of an investigation.
Unfortunately, it is likely that all your efforts won’t lead to significant penalties or reforms. That’s the way it work; these big organizations just get to roll along without a whole lot of true oversight or remediation. But if you do continue to make yourself the squeaky wheel, you may get some attention.
It is possible you could interest the news media in your story. This is probably the best way to put pressure on them to improve. I can’t say whether they would be interested, but you can try.
Ok, big breath. I have laid out most of the options I can think of for now. Bottom line, this is a David and Goliath situation. Even in cases with negligence, it can be so hard to accomplish anything. You have two babies who need a lot of time and attention. It is ok just to focus on giving them the best life you can for your kiddos. You can spend anywhere from a very little to a very lot of time on this, and WHATEVER YOU DECIDE is ok.
My final thought, I know you have been speaking to med mal attorneys without much luck. They are the ones who give you an initial free consult. There are other attorneys who work in health care law. They would charge you for your time from minute one, and it will be a decent amount of money per hour. But they are more qualified than anyone else at walking you through some of these bureaucratic issues. You may even be able to get a recommendation from one of the med mal attorneys.
I am so sorry this happened to your family. Medicine is so poorly regulated when it comes to things like this. I hope your babies grow and thrive. And don’t forget to take a little time for yourselves to grieve. Best wishes.
(Looks like it is the Division of Health Care Facility Licensure and Certification. It sounds like you may have already reported this to them, but if you do some digging you might find an individual person to, ah, encourage to take another look. Squeaky wheel.)
I’m from Boston. Did Boston Children’s recommend you send him to Franciscan’s? Was it an insurance thing? There are definitely internationally recognized hospitals in Massachusetts that are the gold-standard, but I’ve never heard of Franciscan’s being one of them. And I’ve worked in hospitals and was born here.
Unfortunately for anything medical based, this will only go up the chain of command with a lawyer, or if they aren’t releasing his records you have a right to have access to, I’d contact the local news channels.
As a doctor who has treated many patients who came from such facilities, none of this is surprising to me. In my experience it’s the norm in most kinds of LTACs and SARs for patients to be treated this way and they are always a mess when they come to us. We fix them and have to send them back, only for them to come back in a few days with the same issues. It’s honestly heartbreaking for us too.
The only difference? All of the patients I treat are adults and the vast majority of them don’t have family members that care; they know that their loved one is suffering and would probably prefer to be taken off life support, but they continue to keep them alive usually because of financial incentives and/or poor health literacy despite multiple doctors explaining to them that the prognosis is poor and their loved one will never live a normal life.
In your case I’m glad your son has you. Having family support is the only way your son will have any chance of justice and I am so glad you will fight for him.
Go to the local papers with this. Send copies of the emails you’ve sent to administration. Unfortunately, the only way to change this is to go public.
This is what happens in a for profit health care system. It usually isnt uncaring staff (though theres plenty of those dont get me wrong), but more often than not it is they simply don’t have enough resources to do the side tasks, review the charts in detail, read all the tiny fine print because theyre just barely keeping anyone alive with the resources they have, which is never what they need.. It was terrible when I left over a decade ago and I can only imagine it has gotten horrendous post Covid.
Those administrators you are filing complaints with dont care because they intentionally under staff hospitals to keep their share holders happy.
I am sorry you all are experiencing this 🫶🏼 Keep advocating for your child.
I am sorry for your experiences and what your little ones have had to endure.
As a Canadian it always bugs me when people say that the US healthcare system is #1. Unconditionally.
Ufffff as a parent this breaks my heart! Please seek compensation for your discomfort and your baby’s discomfort. That’s the only way these people will learn to treat others with respect and care they deserve. Your sick baby should be cared for by a loving and a professional persons. Hope not a single person has to go through this trauma
Please get a lawyer. I’m so very sorry.
Also, all the places that take reviews, right them. And the Mass licensing board.
This is so awful. I wish you healing in your heart, and his.
Attorney
Lawsuit time
Hire a lawyer.
May every single one of those nurses and doctors get their karma I hope they all get punished for neglecting a baby health like this
I pray that your baby makes full recovery and remains healthy forever
I’m so sorry you have to go through this. But frankly I’m not surprised. “Healthcare” institutions have been cutting and cutting and cutting care so that management can make more and more and more money for themselves. I have a friend who is an RN here in the Midwest and he said it’s an absolute nightmare these days in healthcare.
As a nurse, Franciscan’s has always given me a bad feeling but I’ve never had any evidence (other than Glassdoor reviews when I’ve been job searching) to back it up. I’m so so sorry that the hospital and healthcare workers who you entrusted with the care of your child didn’t care for him adequately. Surely the media (WCVB?) would be interested in hearing about this?
I can’t help but please send Jaxson our love. You can do this, little fighter!
Following
Gotta go the social media and sadly lawyer route, they are covering something up and are being purposefully vague about your poor baby.
Hang in there, your twins are lucky to have you ready to fight!
I am so sorry that happened to you.
Go and see a lawyer… if they did that to you:
Lawyer and report to the state. I am so sorry this happened my
This is horrifying to read. I’m a pediatric cardiac ICU nurse that cross-covers for our traditional peds ICU on a regular basis, and having cared for hundreds if not thousands of medically complex children, what Jaxson went through is beyond the pale. I’ve started acting as a consultant in med mal and you could potentially have a case here. If you have the financial means and the bandwidth right now, please reach out to a medicolegal attorney for a consultation.
I’m sorry you were failed by the very people who were supposed to be fighting for you and Jaxson. You entrusted them with your very vulnerable child and they betrayed that trust. You deserved so much more and I hope, at the very least, you find a way to make them take accountability for their misdeeds.
Holy God, that is absolutely horrific. I know that lawyers cannot usually do anything unless there is lasting damage— which is bullshit.
I had a hospital send my desperately ill child home three times in a row. Her intestine was twisting (which can kill you.) She had had it happen before, so I knew the symptoms. But every time I took her to the ER, it untwisted on the way and then she didn’t have any symptoms— but I knew something was wrong because, over the course of a day and night, it kept happening. And she would be shrieking and writhing in pain. The third time I took her to the emergency room, the doctor told me that there was nothing wrong with her and that I was a “hysterical mother.” He said if I went there again, they would call security on me.
I ended up leaving there and driving straight to another hospital that was an hour and a half away. By the time I got her there, those doctors told me she may have lasted another hour, but she would’ve died if we hadn’t brought her in.
When I tried to hire a lawyer for medical malpractice they told me that, since my daughter had ended up being fine, there was nothing that they could do. Apparently, it’s only malpractice if they do permanent damage??
Although I did notice that there’s now a comment telling you a specific kind of lawyer you can hire, so maybe you would have better luck than I did. It’s definitely something worth looking into when you have the energy.
I would also absolutely be complaining to the Board of Directors and splashing your story all over the Internet. I’d also try to go to the news. Any hospital being this careless and incompetent with a tiny baby is one people absolutely need to know to avoid!!
Also, I truly hope that baby Jaxson is fine and that’s the worst of his struggles are over. I will have you guys in my thoughts ❤️❤️❤️
Im so sorry this happened to you
This is heartbreaking to read 💔
“Staff changed his trach and ventilator settings without telling us.” I’m confused about this one. Why would you need to be informed about ventilator management?
Please call a lawyer.
You need a medical malpractice lawyer.
That breaks my heart to read, I am terribly sorry this happened to your child and family. People gave some good advice already! But from a mom of a 2 year old also in Manchester, if ever you need anything, or any help please send me a message!!
Delete this post and go talk to a lawyer.
I’m so heartbroken reading this. No family should have to fight this hard for basic care, especially for a child so vulnerable. Jaxson deserves better every child does. Keep speaking out. 👍👍👍
Honestly, you should be talking to a lawyer.
This is devastating. My god I would be shattered. Jaxson is so lucky to have parents like you. I know there is a nursing shortage and mistakes happen but there’s no excuse for that kind of treatment, it’s beyond unacceptable. Please update if you get in touch with a lawyer and let us know what comes of this.
You could call the Disability Law Center to see if they’re willing to advocate on behalf of your son. My state’s DLC has done amazing work for kids and adults with disabilities. They’ve worked to craft regulations protecting people from seclusion/restraint at school and in hospital settings, access to crisis care, access to community based services, some criminal justice stuff, and everything in between. They monitor systems that support people with disabilities and may be able to help point you in the right direction.
You need a personal injury lawyer.
Franciscan’s sucks ass. I was in their adolescent psych ward for two weeks and it was hell. I’m so so sorry to hear that your baby is going through this. Please continue speaking out.
This was recommended to me when my daughter had a bad experience at MGH in Boston:
You can try to file a complaint with your insurance company. They may withhold payment on claims while they investigate.
I haven’t tried it myself but was told insurance companies think it’s a big deal and if I did it against MGH we would never be able to receive care there again.
I have no advice. But I want to tell you that I am so, so sorry you are going through this, and I’m so proud of you for advocating for your little man. I wish you all the best.
Truly sorry for your kids and you guys….
Formally take lawsuit actions is what I would do. Hang in there!
That is really sad and disappointing and I’m sorry this happened to you.
I would worry more about getting support than justice. Or if you do go for justice, it should be so that this does not happen again.
Fight the battles you can win.
This was just devastating to read. My own daughter used to have a trach and a g-tube, and was/us medically fragile. I can’t imagine going through what your son went through. I hope that you get some answers soon, and that the hospital answers for their actions.
Contact medical boards and file complaints against nurses and doctors
Just tell me that he is gonna be okay?? Is he recovering? Is he doing better? Sorry but it breaks my heart how people who made the compromise to save lives just cant have compassion for a baby.
I can ensure you that NO ONE would be in or stay in pediatric unless they’re passionate about working with kids. In pediatrics, you’re not just taking care of the kids, you also take care of the parents and family as a whole. They all want to provide the best care possible for their little patients but unfortunately most are understaffed, overworked and burnt out despite their best efforts. Things often get overlooked or missed if you can barely keep your patients alive with the little resource you have. It’s the hospital administration that keeps the system that way to gain more profits.
If legal and regulatory avenues fail to get you anywhere, have you thought about trying to contact the news?
NPR and ProPublica have both done solid reporting on failings in the healthcare system; you might try directly contacting some of the reporters who have done medical stories for one or the other. ProPublica has a documented history of sometimes effecting change through their reporting.
I could also see “This American Life” being interested in covering a story like yours, or perhaps a more investigatory podcast like “Embedded” or “Serial”.
I’m really sorry you and your baby suffered the way you have. I’m glad you were able to advocate for him and that you got him out of there.
I wish I had something productive to add to the discourse here, but it seems the community has you covered. Your sons will be in my thoughts. Wishing you all the best, and rooting for Jaxson!