Saving Sarah: One Mother's Battle Against the Health Care System to Save Her Daughter's Life

by Janet Murnaghan

When her daughter desperately needed a lung transplant to survive, Janet Murnaghan rallied against the outdated restrictions in healthcare that would limit her daughter's options.

Sarah had been dying of cystic fibrosis since the day she was born. The disease quickly ravaged her lungs and little body bit-by-bit. Fragile and frail, she had only weeks to live, when her mom realized the reality of Sarah’s situation: transplant laws, restricting access to lungs based on arbitrary age restrictions, meant Sarah’s options were limited. The injustice of her daughter’s fate spurred Janet to start a public battle against outdated health care regulations and a battle to save Sarah’s life.

Janet transformed her pain and desperation into a voice for Sarah and other kids using social media to broadcast the unfairness, which was robbing Sarah of her right to life with the help of friends and family who emerged as Sarah’s army. How does a family navigate catastrophic illness and life in a hospital, while still maintaining a sense of normalcy? Saving Sarah is a story of hope and courage, and a mother’s determination to never give up. It's also the story of how a family―Janet and her husband Fran have four other children―reacts and adjusts when one of its members is in ongoing crisis.

“I need to fight, and I cannot fight and fall apart at the same time. Each single moment is all that matters.” ―from Saving Sarah

Genres: Nonfiction, Memoir, Biography Memoir

256 pages, Hardcover

Published September 4, 2018

About the author

JANET MURNAGHAN is a former television news producer and public relations executive. When her daughter Sarah was denied a life-saving double lung transplant, she led a campaign to save her daughter’s life with the support of family, friends, the media, members of Congress, and the general public. Formerly from the suburbs of Philadelphia, she now lives in Florida with her husband and five children.

Reviews

[Audrelyn · Rating 5 out of 5]

I really enjoyed this book! As a mother myself I found it to be painful to read but important nonetheless!
Sarah is a rockstar! She is strong, she is brave! I wish her a life of health and happiness!
To Janet.....you are the definition of what a true mom is! I am so proud of the way you advocated for your daughter and refused to give up!

[Eileen · Rating 5 out of 5]

An emotional, inspirational and exhilarating story of one families struggle to get lungs for their daughter with CF. Once you start reading it is hard to put down

[Laura Hundley · Rating 5 out of 5]

Oh my goodness. This poor family went through a living nightmare. Sarah was born with cystic fibrosis and needed a transplant. The system it would seen failed her in so many ways and meant her family would have to fight for what they needed. This made me think of the movie John Q where the son needed a heart transplant This book had me in tears most of the way through the whole book. The writer Janet Murnaghan, does a great job of sticking to the facts and writing in such a way that encapsulates you. I wanted to jump through the pages and help Sarah myself. I am glad that this story was written. Some stories just need to be told. There are others fighting the same battle and they need to know it can be done. The ending was somewhat abrupt but it did not take away from the story.

Thank you netgalley as well as the author/publisher for giving me the opportunity to read this book in exchange for my honest review.

5++ ⭐️ out of 5

[Katherine · Rating 5 out of 5]

This heartrending, courageous story fully immerses you in the life of a family with a critically sick child who is waiting for a double lung transplant. It is written from different points of view, including the 10 year old girl’s, and really rolls along with the ups and downs of their day to day existence. If you’d had a child in the hospital for any length of time you will recognize what they are going through, if not you will be better prepared if it happens to you or someone you know. Thank you to #netgalley for the opportunity to read #savingsarah before publication.

[Melanie McGrade Davidson · Rating 5 out of 5]

This was a powerful memoir about an incredibly strong little girl trying to survive and overcome living with cystic fibrosis, and would not have been able to do so without the defiance, determination and love of her mother. Though this novel was informative and educational, it was also a beautiful story, and I found myself feeling so emotional while reading it. This poor little girl went through so much, but her spunk, brevity, and strength prevailed. She reminded others that you must go on and not give up the fight. Her mom, Janet, was a tenacious woman who wanted only what was best for her daughter, and listened to her gut (like a mother should), and often had to question and even stand up against the decisions that the medical staff made, and against the laws that had been in place before Sarah’s illness declined.. Though exhausted herself, Janet was always there for Sarah, and still tried to be the best mom and wife to the rest of her family. She gathered her resources, family, and friends and was able to create a team of people who all chipped in and helped change laws and not only save Sarah, but likely many others after her. Though I do not have personal ties to anyone with CF, I still found this book to be amazing. It was written so well, and despite that it was chock full of facts, data, and law, it was still a captivating read that I was completely engrossed in.

[Leslie · Rating 5 out of 5]

This powerful memoir alternates narratives from Sarah's mother, Sarah, her father, and other family members and captures their strength and courage to fight for her life as she desperately needed a double lung transplant to survive, their decision to go public about the arbitrary age policy that resulted in twice as many children under 12 who needed lung transplants dying as people 12 or older, their legal victory and the aftermath of her transplants, and her road to health post-transplant. At the age of 10 1/2 and close to dying due to cystic fibrosis, Sarah and her family were told she was unlikely to receive a lung transplant due to being under 12, although based on her disease severity she would have been at the top of the list to have a life saving transplant. Their legal and publicity battle resulted in changes to how children could be considered for organ transplants. Her mother and family are clear that they were not asking for her and children like her to be ahead of the list of others needing a transplant, but that children needing transplants should be in the same list, based on disease severity and other factors.. This book was amazing and engrossing. Even though I knew the outcome, I couldn't put it down. Sarah's and her mother's strength, determination, and love are inspiring. The chapter at the end directed to families who have a family member needing a transplant will surely help others in this situation. I was so thankful to read this advance copy through Net Galley and St. Martin’s Press and am happy that she and her family are doing so well.

[Lori Eyre · Rating 5 out of 5]

I loved this book. It was hard to read as a mom because you know this mother is doing everything she can for her daughter who needs a lung transplant due to cystic fibrosis. It was very interesting to me to read about the laws and politics that went into getting things changed. I highly recommend this book.

[Chelsea Gaarder · Rating 5 out of 5]

I finished this memoir a few days ago and have had to process because this one just left me so emotionally raw that I didn’t even know how to begin to put my feelings to words. I still don’t feel I will be able to do it justice, but I will do my best. This novel is written by Janet Murnaghan, a mother of 4 lovely children, one of which is Sarah who was diagnosed after her first abnormal and sickly 18 months of life with the cruel disease of Cystic Fibrosis. I will say upfront, that as a mother of a young daughter, this was horribly emotional for me to read and process through. But it is such an important read. One of the things I find most beneficial about reading is developing empathy for others that experience things outside of our realm, sometimes things that we hope to never experience in this case…

I will not hesitate to tell you that I cried more throughout reading this story than I ever have reading a book before. The rawness of a mothers worse fear come to life, a true hell on earth, was just about too much for my mama heart to handle. But while I hope to never personally understand anything that she went through, it forced me to realize my family’s good luck in our bill of health and not take it for granted for even a day. Though I’ve always felt horrible for anyone under those circumstances this took my compassion for families of sick children and the children themselves to a whole different level, I think they are too often forgotten. I personally have had a dance student with CF that has overcome so many ups and downs and from a distance it has broken my heart but this gave me understanding unlike anything before. It was impossible to not imagine myself in the mom’s shoes and I just had to put my book down so many times to catch my breath from sobbing at how horrifically tragic and unfair such sickness is, much less in a child. The strength of that is more than a family should ever have to summon, but for finding that determination to overcome and being a pillar in moments of such desperate peril, I will forever see Janet as a hero. I don’t want to give all the story away, but the way the community lifted Sarah up,was so absolutely heartwarming and reminded me there is goodness in the world. The whole situation regarding the red tape in organ donation and receiving process was disgusting and I grieve for children that were lost to such flaws in our system prior to this story. 

I really don’t know what else to say, this book is just the tiniest glimpse into a world I never want to know, but so glad I read about. It will destroy you and make you hug your loved ones SO much tighter for many nights following. It is necessary reading despite the off the charts feelings of sadness it presents. I highlighted so many quotes it was hard to choose, but I will leave you with this, a note from one of Sarah’s many doctors’ whose life was forever touched by her, as was mine and I’m sure anyone who reads this will relate, with admiration on a level above all others for an inner strength way beyond her years..

“Occasionally, though, we are taught special lessons from our patients that profoundly influence how we care for others and how we aspire to conduct ourselves. I am humbled to be one of Sarah’s students, and I hope that I can meet my own challenges with the same grace and determination that she demonstrates every day.”

If for no other reason than to learn of 10 year old girl that will inspire you with strength beyond her years and to put your everyday problems into MAJOR perspective, read this book. *5 stars

[Ken-Gin DeLeone · Rating 5 out of 5]

Grab a box of tissues. It is incredibly difficult to read about little Sarah's suffering and decline from cystic fibrosis, and learning that lung transplant rules are making it almost impossible for Sarah to receive a lung transplant in time to save her. After research, Sarah's mother Janet and her aunt Sharon realize this and they mount a BATTLE against the bureaucracy to force a change. This exposure of the child transplant rules, made me beyond angry to realize that how many children must have died due to this inequity. Medical advancements had been made but the organ transplant rules were not changed to incorporate them. This book makes it plain to me that those in charge were definitely not doing their job to keep up with advancements. I admire Janet and her group for their tenacity and the strategy they designed to bring this to the attention of the public, which was the driving force. Sarah is at deaths door. Finally, after many refusals and delays, a judge grants consideration on a case by case basis. Sarah receives her lungs but she is much sicker at that point. As I felt such sadness for all Sarah and her family endures, it does have a happy ending. Actually, it rises to the level of a miracle when you learn the details. Eventually the rules are permanently changed and all Janet's efforts result in children having a better chance at survival. As I said, it is very hard to read, but I appreciate now that I better understand what people go through when dealing with devastating illnesses, especially when it involves their child.

[Dkahn · Rating 5 out of 5]

I remember the news coverage years ago - and the strength of the family and little Sarah bravely fighting for her life. What I didn't know are all the details. And the details are what makes this story so remarkable and such a compelling read.

Imagine your daughter's in the hospital for months in need of a double lung transplant. As doctors start to indicate the worst case scenario is likely, you and your family alone determine that there is an inequitable federal donor policy making it nearly impossible for your daughter to get her life-saving transplant in time. Imagine you fight this with every once of your being... Imagine you are able to beat the odds. With your precious daughter by your side, you tell your story to the world.

Be inspired by what the love of a child can make you capable of and how the better part of humanity can lift you up.

[Anne · Rating 5 out of 5]

I couldn’t put this down. What would you do if you took your barely breathing child to the ER for treatment but had to wait until every adult was seen first- including a 50 year old man with a sprained ankle? Probably the same thing you’d do if you learned that an arbitrary federal policy was preventing your dying daughter from a life saving transplant. Fight like hell.
The author is a gifted writer who shares the hospital bedside experiences advocating for her daughter, fighting Washington, and becoming an accidental activist for fair organ transplant laws. She makes Erin Brokovich seem like a lightweight whistleblower.

Even though I knew the story ends happily, her depictions of the life behind hospital doors and inside the pediatric ICU are painfully gripping. The book reads like a movie and shows the power of a mother’s love, a girl’s determined strength, and female friends who help storm Washington with calls for change.

[Tfalcone · Rating 4 out of 5]

Thank you NetGalley for the free ARC.
Fascinating book about one family's fight with cystic fibrosis and lung transplant politics. This could be a great resource for somebody whose child is facing a lung replacement.

[Michelle Kidwell · Rating 5 out of 5]

Saving Sarah
One Mother's Battle Against the Health Care System to Save Her Daughter's Life
by Janet Murnaghan

St. Martin's Press

Biographies & Memoirs
Pub Date 04 Sep 2018


I am reviewing a copy of Saving Sarah through St. Martin’s Press and Netgalley:


Sarah was born with Cystic Fibrosis and his been dying from the day she was born. The disease quickly destroyed her lungs and her body bit by bit. Sarah was fragile and frail with only weeks to live when her Mom realized the reality of Sarah’s situation, the transplant laws, restricting access based on age restrictions leaving Sarah’s options limited. The injustice of her daughter's fate based on these laws drove Janet to fight for her daughter and others like her.


Janet was able to transfer her pain and desperation into a voice for Sarah as well as other kids using social media to broadcast the unfairness, the unfairness that was taking her daughters right to live from her.


Against all odds and in large part due to her Mother Sarah survives despite being close to death on more than one occasion, but it is not without struggle.

Saving Sarah is a story of hope and courage.


Five out of five stars!


Happy Reading!

[Cristie Underwood]

The author wrote about her battle to get her daughter the care she needed to live in raw detail that made me feel personally connected to her and her daughter. The immeasurable lengths that a mother will go to save her child are conveyed throughout this book.

[Hayley · Rating 2 out of 5]

This book was amazing you really saw the struggle that the family had to go through. Things have always been hard for the family since the say Sarah was born she was diagnosed with cystic fibrosis and has been literally dying. With limited options the family puts young Sarah on the transplant list and prays for the best. Things get bleaker however when the family realises that because of the states laws regarding transplants Sarah's options are greatly limited. I really enjoyed this story however it really reminded me of Jodi Picoult's "My Sister's Keeper". The family at its breaking points takes on the corupt system and tries to get their daughter onto the adult transplant list and in turn allowing her access to thousands more donor lungs should they become available. I found this book so sad and the fact that its a true story is remarkable. The whole family took on the world in this novel and it was so realistic in the way that it was written. Nice read but very sad, definitely a tear jerker. The only thing I didn't like about this book was the ending. I found it very abrupt, while I know that its a true story so it won't have a definate end the family is still surviving, it was almost as if the last few pages were torn out it left me feeling like there was still something left to be said

[Katie O. · Rating 4 out of 5]

Well-paced, crystal clear portrayal of medical and moral imperatives in pediatric care (organ transplant, in particular). Excellent job portraying the medical detail, chronology, and milestones of progress and key decisions in a manner that was honestly personal yet more generally relatable. Serious, serious kudos to the way this family (esp. parents, siblings, cousins, aunts, grandparents) rallied and hung tight over the long haul and at the exhausting minute-by-minute, frontline level of care that is needed. Example after example of why/how/when patient advocacy by the person who know the patient well literally saves lives. Kudos also to skilled, tireless, communicative, and daring medical staff who made the hard stuff happen. And while I was slightly less interested in the critical PR campaign that organically sprang from this family's search for real help in real time, the group that made that happen (and how it was portrayed) also was very well done. I think there may be a few more fair questions to consider about how/why patients qualify to receive organs than were covered in this book, but Murnaghan is very thorough on those questions critical to her daughter's care (and many others who benefit from her team's efforts). Impressed by the final chapter's 'How to Find Organs 101' list of practical steps & questions supported by a concise explanation of at least one portion of critical data.

[Robin Hersh · Rating 5 out of 5]

WOW! Umm yea get a box of tissue or some viva paper towels for sure! It has me bawling my eyes out the first 10 pages and throughout, but all in all a great book for anybody who needs to get a transplant or knows somebody who needs one. This is a great book to learn how to take care of your loved ones better, these people really did their research. Not so many people will be so lucky as to know the people they did to help them, but they do give you very good resources so if you have somebody in your life going through a similar circumstance, this is a great book to read. I’m very….how well I don’t want to do spoilers. So it’s a great book so I won’t finish my thought on that but it took me only one day but that was with doing chores and other stuff so it’s a quick read if u have time. Thanx so much for sharing ur story! a big wake up call about the government as well regarding our healthcare. My heart is with your family. Thank you again for sharing.

[Cindy · Rating 3 out of 5]

I read this book in one sitting. If you choose to do the same make sure you have a box of Kleenex nearby. It is a moving story of a human "mama bear" fighting for her deathly ill 10 year old daughter. The mom (and her village of family and friends) are truly heroes and it is a story worth knowing. The reason for three stars is that the book was very repetitive. The narrated is the mom and then she inserted perspectives from the 10 year old, her dad and other characters. I like the idea of this concept but not the implementation; much of what they said was repeating the same events we had already heard.

Thank you NetGalley for providing me with an early release of this book in exchange for an honest review.

[Rkrynak · Rating 5 out of 5]

Well written book that shares Sarah's story of battling Cystic fibrosis.

[Chelsa · Rating 2 out of 5]

I feel so bad, but I just couldn’t get into this book. I cannot imagine the fear, pain and frustration that would come with having a child with a terrifying illness. As much as I wanted to like this book, it was just slow, redundant and without having a personal connection to cystic fibrosis, I felt kind of out of the loop. This book focuses a lot more on the legal process of obtaining an organ transplant than I expected.

[Jules Thompson · Rating 3 out of 5]

I work in healthcare, specifically at a children's hospital, so reading this book felt very familiar to me. Janet Murnaghan is a great writer and even better at conveying the complex emotions felt by the families and care teams of sick children. I think this should be required reading for anyone pursuing a career in pediatrics who thinks it will be "fun" and "easy" (actual comments from fellow health students) compared to adult medicine. I especially like the passages from Sarah's perspective-it can be hard not to depersonalize patients, and Sarah's vivid personality enhances the book. Overall a great read.

[Gunnar Esiason · Rating 2 out of 5]

I was given an advanced copy of the book with the understanding I’d give feedback. I am a person living with cystic fibrosis and a patient advocate.

I remember when Sarah’s battle to get a life saving transplant was widely covered on the news. Her fight to get lungs was not only courageous, but also incredibly inspirational. Unfortunately, this book does not capture that. I was left with a bad taste in my mouth after finishing the text. It’s hard to say whether the editor, publisher, writer or some other unknown factor ruined this story.

What should have been a story about a courageous little girl, ended up being a book about a self-proclaimed hero. The text strayed far from its topic - Sarah - and instead discussed how amazing her mother was in various situations.

Several sections were cringeworthy and difficult to get through because they felt like the writer was giving herself a giant pat on the back.

I couldn’t help but wonder if someone, somewhere, during the development of the book, saw the above issue and figured adding voices from other people involved in the ordeal (family members, friends and Sarah herself) would remedy the problem. The external voices, of course, didn’t. Instead they served to validate the writer’s quest to be the hero.

I hope one day to read Sarah’s point of view of something that really was amazing. She was the one in the hospital bed, I want to hear her story. Maybe a memoir later in life?!

The book gets two stars because of how amazing and courageous Sarah was through the whole thing... otherwise I wouldn’t have been able to justify giving more than a single star. I was very disappointed with how the story was delivered.

[Literaturealatte (Jalyn) · Rating 5 out of 5]

Saving Sarah is the story of Janet Murnaghan’s fight for her daughter’s life, fighting the system to get her daughter a lung transplant. Due to her age, Sarah falls in a crack where she would not qualify for transplant of adult lungs. Rather than sit back and do nothing, Karen, as well as her family and friends, do their research to fight and get what Sarah needs to live.

Having been in the medical field for ten years and aspiring to be a nurse, this story drew me in. I hope I never have to endure what Janet went through, but if I do I could use some of her advice. I am thankful that Mrs. Murnaghan included information at the end for parents going through similar ordeals involving transplants. She gives you tips on where to go to find information, whether it be where your child can get the best level of care, to finding information involving specific transplants. Every mother should read this!