(CDH) Pediatric Surgery Stories from Morgan Stanley Children’s Hospital

Courtesy of Dr. Charles Stolar
Morgan Stanley Children’s Hospital of New York – Presbyterian

(Repost) No One Knows

No One Knows….
by Dawn Williamson

No one knows what it’s like to be diagnosed with Congenital Diaphragmatic Hernia and have your world shatter – unless they have been there themselves.

No one knows what it’s like to watch your baby struggle to breathe – unless they have been there themselves.

No one knows what it’s like to cry yourself to sleep at night wondering if today was the last day you had with your child and the hospital could call at any minute – unless they have been there themselves.

No one knows what it’s like to have to leave the pediatric intensive care unit because you’ve been there so long that they kick you out – unless they have been there themselves.

No one knows what it’s like to sleep on the floor of the ICU waiting room because the Ronald McDonald House is too far way at just 2 blocks from the hospital and you need to be RIGHT THERE in case your child needs you – unless they have been there themselves.

No one knows what it’s like to sit in a Care Conference crying for your child’s rights, begging staff to not give up on your baby and send him to a chronic care facility – unless they have been there themselves.

No one knows what it’s like to have to learn how to work life support systems that your child’s very being depends on – a ventilator, an oxygen concentrator, feeding pumps – unless they have been there themselves.

No one knows what it’s like to ask yourself “Why my child?” so many times that even God is tired of hearing it – unless they have been there themselves.

No one knows what it’s like to have to explain over and over and over and over what your child’s medical condition is to family and friends and a society that has never heard of it – unless they have been there themselves.

No one knows what it’s like to struggle with marriage issues because you’re dealing with reality in different ways and one of you is stuck with making all the decisions while the other lives in la-la-land – unless they have been there themselves.

No one knows what it’s like to scream at a nurse that they don’t know what they are doing while suctioning your child’s ET-tube and it’s about to come out and if they don’t step away from his bed you will step in and physically remove them – unless they have been there themselves.

No one knows what it’s like to have to fight to get treatment for a bedsore on your child’s back from being in the same position for 3 weeks – unless they have been there themselves.

No one knows what it’s like to actually loudly cheer for a child to pee – just pee – unless they have been there themselves.

No one knows what it’s like to never hear your child cry until they are a year old because there are tubes down his throat preventing his vocal cords from working – unless they have been there themselves.

No one knows what it’s like to not hold your child until 2 weeks after he was born because he’s hooked up to too many machines keeping him alive – unless they have been there themselves.

No one knows what it’s like to lose count of how many IVs your child has had, or what scars are from what surgery, or how many meds he’s been on in his entire life, or doctors he’s seen – unless they have been there themselves.

No one knows what it’s like to be on your hands and knees in a surgical waiting room begging and pleading with God to take you instead of your child – unless they have been there themselves.

No one knows what it’s like to put a tube down your child’s nose and into their stomach, or past the stomach – while making sure not to hit the lungs – so that your child can eat formula from a pump – unless they have been there themselves.

No one knows what it’s like to miss a pulse ox when it’s gone because then you can’t sleep because you’re terrified that your child will stop breathing – unless they have been there themselves.

No one knows what it’s like to hook your child’s ventilator up to a car battery because the power is out, while screaming at the electric company to fix the problem and talking to the doctors and ordering an ambulance at the same time – unless they have been there themselves.

No one knows what it’s like to call 911 more than you call the pizza delivery place – unless they have been there themselves.

No one knows what it’s like to duck from flying hearing aids because your 2 yr old can’t understand that they aren’t toys and need to stay in his ears – unless they have been there themselves.

No one knows what it’s like to watch “normal” healthy kids and make wishes for your child that you aren’t sure will ever happen, like riding a bike or going to school or playing baseball – unless they have been there themselves.

No one knows what it’s like to have had more rides in ambulances in your life than in taxi cabs – unless they have been there themselves.

No one knows what it’s like to go out in public and have people point and whisper about your baby, because he’s in his stroller attached to a vent, oxygen tank, feeding pump, and pulse-ox – and yet you put on a cute little outfit or a baseball cap on his head in a feeble attempt to make him look less conspicuous and more normal – unless they have been there themselves.

No one knows what it’s like to go into the ladies room and cry alone because you don’t want your baby to see you crying beside his hospital bed – unless they have been there themselves.

No one knows what it’s like to try to sing songs and read children’s books to your child like everything is normal and you so desperately want all the normal things healthy families have, even though you don’t know if your child will live through the week because he has a blood infection – again – unless they have been there themselves.

No one knows what it’s like to be told your child’s kidneys are shutting down, oxygen levels are below 50, and he won’t live through the night – but he does – unless they have been there themselves.

No one knows what it’s like to travel with more electric equipment in your car than the FBI – unless they have been there themselves.

No one knows what it’s like to spell D-I-A-P-H-R-A-G-M-A-T-I-C H-E-R-N-I-A in your sleep – unless they have been there themselves.

No one knows what it’s like to hire home health nurses and then have to oversee them and make sure that they aren’t sleeping when your child’s vent pops off his trach at 1 am – unless they have been there themselves.

No one knows what it’s like to jump up and down squealing because your child is walking – at 2 and a half yr old – unless they have been there themselves.

No one knows what it’s like to battle the school system and have an IEP for a child who has a feeding tube, hearing aids, thick eyeglasses and being told that they “can’t handle all his issues” so you are better off homeschooling – unless they have been there themselves.

No one knows what it’s like to consider moving to another country to get their universal health care because your child doesn’t qualify for any decent insurance with all his pre-existing medical conditions and you can’t afford the medical bills of the $6 million dollar baby unless you make so little money that you qualify for Medicaid – unless they have been there themselves.

No one knows what it’s like to be asked “so what caused him to be sick?” while being looked at like YOU did something to cause it – and have the only answer that anyone has to that question “I DON’T KNOW!” – unless they have been there themselves.

No one knows what it’s like to carry medical records with you every where you go “just in case” – unless they have been there themselves.

No one knows what it’s like to perform CPR on your own child – more than once – unless they have been there themselves.

No one knows what it’s like to plan holidays and vacations around hospitalizations, doctor visits, therapy appts and cold and flu seasons – unless they have been there themselves.

No one knows what it’s like to not be able to go home for Christmas because your child could catch a cold that would kill him – unless they have been there themselves.

No one knows what it’s like to grieve a LIVING child because your dreams are gone, then living with the guilt of feeling that way – unless they have been there themselves.

No one knows what it’s like to try to communicate with a child who can’t talk and struggles with sign language to the point that both of you cry – unless they have been there themselves.

No one knows what it’s like to be young and have the responsibility of not only being a parent but a parent of an extremely special needs child – unless they have been there themselves.

No one knows what it’s like to scream down the hospital hallway “Help! My child can’t breathe!” or “Where is my son’s 2:00 meds?” or “He is allergic to that!” – unless they have been there themselves.

No one knows what it’s like to leave the hospital without your baby but with his bed sheets and linens instead because he’s allergic to EVERYTHING and so you wash them in gentle detergent and bring them back for him – unless they have been there themselves.

No one knows what it’s like to live in constant worry that another child will spill his milk on your child, sending him into anaphylactic shock if the epi pen you carry EVERYWHERE isn’t given fast enough – unless they have been there themselves.

No one knows what it’s like to be in the hospital so much you’re on a first name basis with your surgeons, PICU doctors, nurses, secretarial staff and the cleaning crew – to the point that you double-date with your spouses, take vacations together and still send each other Christmas cards 15 yrs later – unless they have been there themselves.

No one knows what it’s like to be in the hospital so long that when you come home you actually miss the cafeteria food – unless they have been there themselves.

No one knows what it’s like to spend every hour that visiting isn’t permitted in the PICU in the medical library, looking up your child’s birth defect because NO ONE SEEMS TO KNOW WHAT THE HELL IT IS or where you can find information or support. And then spending hours beside your child’s hospital bed with a medical terminology book translating it all – unless they have been there themselves.

No one knows what it’s like to be told that your child won’t live to be transported to the larger hospital so you should say good-bye – unless they have been there themselves.

No one knows what it’s like to have a surgeon tell you “we’ve done this surgery so many times on him that we aren’t sure how else to go in there” – unless they have been there themselves.

No one knows what it’s like to watch your child’s first haircut being done by a nurse to prep for an IV going into this head instead of at the barber – and still taking photos of it for his baby book – unless they have been there themselves.

No one knows what it’s like to be told that your son will never see or hear or breathe on his own, and then show them that they are wrong – unless they have been there themselves.

No one knows what it’s like to be so frustrated with feeding therapy, begging your child to please “take just one bite for Mommy, PLEASE” – unless they have been there themselves.

No one knows what it’s like to be so excited to meet a medical professional who UNDERSTANDS what CDH is and who really, truly cares about these kids, your kid, and how that person now has your gratitude and part of your heart forever – just for caring – unless they have been there themselves.

No one knows what it’s like to lose your child – unless they have been there themselves.

No one knows what it’s like to lose your child in your own arms, while they look up at you and you try and try to save them but can’t – and the guilt you live with every day for not being able to perform a miracle, the impossible, more than even the doctors because you’re mommy and you’re supposed to do the impossible – unless they have been there themselves.

No one knows what it’s like to pick out the clothes your child will be in forever, buried in and what toys and books to pack with him – unless they have been there themselves.

No one knows what it’s like to cry so much your heart feels like it’s coming out of your throat because you miss your baby so much – unless they have been there themselves.

No one knows what it’s like to mourn and grieve and try to make something good come from all the sadness without going over the deep end and trying to make a martyr out of your child’s memory and turning them into a superhero instead of … your baby …. because you want to remember them for who they were and not who you wanted them to be – unless they have been there themselves.

No one knows what it’s like to ask God a different “Why my child?” question millions and millions of times until He cries with you – unless they have been there themselves.

I know, because I have been there. I didn’t read it in a book or in someone else’s story. I didn’t learn about this from an article or research abstract. I don’t pretend to understand things I never experienced. I lived it all. I cried it. I survived it. I woke up to every single day. I slept with it on my mind every single night. I was immersed in this world of CDH for 6 and a half years. I still am. CDH is more just a birth defect. It’s more than a day or a few weeks in the hospital. It’s more than 1 surgery. It’s every single moment in a cherub’s life. Every single one. I know this because I lived it.

And I know over 2200 other moms who have lived it too. Who understand. Who didn’t learn from book or stories but who lived it. Parts of it or all of it. They understand. They are the moms and dads and children of CHERUBS.

http://www.cdhsupport.org

No One Knows….

No One Knows….
by Dawn Williamson

No one knows what it’s like to be diagnosed with Congenital Diaphragmatic Hernia and have your world shatter – unless they have been there themselves.

No one knows what it’s like to watch your baby struggle to breathe – unless they have been there themselves.

No one knows what it’s like to cry yourself to sleep at night wondering if today was the last day you had with your child and the hospital could call at any minute – unless they have been there themselves.

No one knows what it’s like to have to leave the pediatric intensive care unit because you’ve been there so long that they kick you out – unless they have been there themselves.

No one knows what it’s like to sleep on the floor of the ICU waiting room because the Ronald McDonald House is too far way at just 2 blocks from the hospital and you need to be RIGHT THERE in case your child needs you – unless they have been there themselves.

No one knows what it’s like to sit in a Care Conference crying for your child’s rights, begging staff to not give up on your baby and send him to a chronic care facility – unless they have been there themselves.

No one knows what it’s like to have to learn how to work life support systems that your child’s very being depends on – a ventilator, an oxygen concentrator, feeding pumps – unless they have been there themselves.

No one knows what it’s like to ask yourself “Why my child?” so many times that even God is tired of hearing it – unless they have been there themselves.

No one knows what it’s like to have to explain over and over and over and over what your child’s medical condition is to family and friends and a society that has never heard of it – unless they have been there themselves.

No one knows what it’s like to struggle with marriage issues because you’re dealing with reality in different ways and one of you is stuck with making all the decisions while the other lives in la-la-land – unless they have been there themselves.

No one knows what it’s like to scream at a nurse that they don’t know what they are doing while suctioning your child’s ET-tube and it’s about to come out and if they don’t step away from his bed you will step in and physically remove them – unless they have been there themselves.

No one knows what it’s like to have to fight to get treatment for a bedsore on your child’s back from being in the same position for 3 weeks – unless they have been there themselves.

No one knows what it’s like to actually loudly cheer for a child to pee – just pee – unless they have been there themselves.

No one knows what it’s like to never hear your child cry until they are a year old because there are tubes down his throat preventing his vocal cords from working – unless they have been there themselves.

No one knows what it’s like to not hold your child until 2 weeks after he was born because he’s hooked up to too many machines keeping him alive – unless they have been there themselves.

No one knows what it’s like to lose count of how many IVs your child has had, or what scars are from what surgery, or how many meds he’s been on in his entire life, or doctors he’s seen – unless they have been there themselves.

No one knows what it’s like to be on your hands and knees in a surgical waiting room begging and pleading with God to take you instead of your child – unless they have been there themselves.

No one knows what it’s like to put a tube down your child’s nose and into their stomach, or past the stomach – while making sure not to hit the lungs – so that your child can eat formula from a pump – unless they have been there themselves.

No one knows what it’s like to miss a pulse ox when it’s gone because then you can’t sleep because you’re terrified that your child will stop breathing – unless they have been there themselves.

No one knows what it’s like to hook your child’s ventilator up to a car battery because the power is out, while screaming at the electric company to fix the problem and talking to the doctors and ordering an ambulance at the same time – unless they have been there themselves.

No one knows what it’s like to call 911 more than you call the pizza delivery place – unless they have been there themselves.

No one knows what it’s like to duck from flying hearing aids because your 2 yr old can’t understand that they aren’t toys and need to stay in his ears – unless they have been there themselves.

No one knows what it’s like to watch “normal” healthy kids and make wishes for your child that you aren’t sure will ever happen, like riding a bike or going to school or playing baseball – unless they have been there themselves.

No one knows what it’s like to have had more rides in ambulances in your life than in taxi cabs – unless they have been there themselves.

No one knows what it’s like to go out in public and have people point and whisper about your baby, because he’s in his stroller attached to a vent, oxygen tank, feeding pump, and pulse-ox – and yet you put on a cute little outfit or a baseball cap on his head in a feeble attempt to make him look less conspicuous and more normal – unless they have been there themselves.

No one knows what it’s like to go into the ladies room and cry alone because you don’t want your baby to see you crying beside his hospital bed – unless they have been there themselves.

No one knows what it’s like to try to sing songs and read children’s books to your child like everything is normal and you so desperately want all the normal things healthy families have, even though you don’t know if your child will live through the week because he has a blood infection – again – unless they have been there themselves.

No one knows what it’s like to be told your child’s kidneys are shutting down, oxygen levels are below 50, and he won’t live through the night – but he does – unless they have been there themselves.

No one knows what it’s like to travel with more electric equipment in your car than the FBI – unless they have been there themselves.

No one knows what it’s like to spell D-I-A-P-H-R-A-G-M-A-T-I-C H-E-R-N-I-A in your sleep – unless they have been there themselves.

No one knows what it’s like to hire home health nurses and then have to oversee them and make sure that they aren’t sleeping when your child’s vent pops off his trach at 1 am – unless they have been there themselves.

No one knows what it’s like to jump up and down squealing because your child is walking – at 2 and a half yr old – unless they have been there themselves.

No one knows what it’s like to battle the school system and have an IEP for a child who has a feeding tube, hearing aids, thick eyeglasses and being told that they “can’t handle all his issues” so you are better off homeschooling – unless they have been there themselves.

No one knows what it’s like to consider moving to another country to get their universal health care because your child doesn’t qualify for any decent insurance with all his pre-existing medical conditions and you can’t afford the medical bills of the $6 million dollar baby unless you make so little money that you qualify for Medicaid – unless they have been there themselves.

No one knows what it’s like to be asked “so what caused him to be sick?” while being looked at like YOU did something to cause it – and have the only answer that anyone has to that question “I DON’T KNOW!” – unless they have been there themselves.

No one knows what it’s like to carry medical records with you every where you go “just in case” – unless they have been there themselves.

No one knows what it’s like to perform CPR on your own child – more than once – unless they have been there themselves.

No one knows what it’s like to plan holidays and vacations around hospitalizations, doctor visits, therapy appts and cold and flu seasons – unless they have been there themselves.

No one knows what it’s like to not be able to go home for Christmas because your child could catch a cold that would kill him – unless they have been there themselves.

No one knows what it’s like to grieve a LIVING child because your dreams are gone, then living with the guilt of feeling that way – unless they have been there themselves.

No one knows what it’s like to try to communicate with a child who can’t talk and struggles with sign language to the point that both of you cry – unless they have been there themselves.

No one knows what it’s like to be young and have the responsibility of not only being a parent but a parent of an extremely special needs child – unless they have been there themselves.

No one knows what it’s like to scream down the hospital hallway “Help! My child can’t breathe!” or “Where is my son’s 2:00 meds?” or “He is allergic to that!” – unless they have been there themselves.

No one knows what it’s like to leave the hospital without your baby but with his bed sheets and linens instead because he’s allergic to EVERYTHING and so you wash them in gentle detergent and bring them back for him – unless they have been there themselves.

No one knows what it’s like to live in constant worry that another child will spill his milk on your child, sending him into anaphylactic shock if the epi pen you carry EVERYWHERE isn’t given fast enough – unless they have been there themselves.

No one knows what it’s like to be in the hospital so much you’re on a first name basis with your surgeons, PICU doctors, nurses, secretarial staff and the cleaning crew – to the point that you double-date with your spouses, take vacations together and still send each other Christmas cards 15 yrs later – unless they have been there themselves.

No one knows what it’s like to be in the hospital so long that when you come home you actually miss the cafeteria food – unless they have been there themselves.

No one knows what it’s like to spend every hour that visiting isn’t permitted in the PICU in the medical library, looking up your child’s birth defect because NO ONE SEEMS TO KNOW WHAT THE HELL IT IS or where you can find information or support. And then spending hours beside your child’s hospital bed with a medical terminology book translating it all – unless they have been there themselves.

No one knows what it’s like to be told that your child won’t live to be transported to the larger hospital so you should say good-bye – unless they have been there themselves.

No one knows what it’s like to have a surgeon tell you “we’ve done this surgery so many times on him that we aren’t sure how else to go in there” – unless they have been there themselves.

No one knows what it’s like to watch your child’s first haircut being done by a nurse to prep for an IV going into this head instead of at the barber – and still taking photos of it for his baby book – unless they have been there themselves.

No one knows what it’s like to be told that your son will never see or hear or breathe on his own, and then show them that they are wrong – unless they have been there themselves.

No one knows what it’s like to be so frustrated with feeding therapy, begging your child to please “take just one bite for Mommy, PLEASE” – unless they have been there themselves.

No one knows what it’s like to be so excited to meet a medical professional who UNDERSTANDS what CDH is and who really, truly cares about these kids, your kid, and how that person now has your gratitude and part of your heart forever – just for caring – unless they have been there themselves.

No one knows what it’s like to lose your child – unless they have been there themselves.

No one knows what it’s like to lose your child in your own arms, while they look up at you and you try and try to save them but can’t – and the guilt you live with every day for not being able to perform a miracle, the impossible, more than even the doctors because you’re mommy and you’re supposed to do the impossible – unless they have been there themselves.

No one knows what it’s like to pick out the clothes your child will be in forever, buried in and what toys and books to pack with him – unless they have been there themselves.

No one knows what it’s like to cry so much your heart feels like it’s coming out of your throat because you miss your baby so much – unless they have been there themselves.

No one knows what it’s like to mourn and grieve and try to make something good come from all the sadness without going over the deep end and trying to make a martyr out of your child’s memory and turning them into a superhero instead of … your baby …. because you want to remember them for who they were and not who you wanted them to be – unless they have been there themselves.

No one knows what it’s like to ask God a different “Why my child?” question millions and millions of times until He cries with you – unless they have been there themselves.

I know, because I have been there. I didn’t read it in a book or in someone else’s story. I didn’t learn about this from an article or research abstract. I don’t pretend to understand things I never experienced. I lived it all. I cried it. I survived it. I woke up to every single day. I slept with it on my mind every single night. I was immersed in this world of CDH for 6 and a half years. I still am. CDH is more just a birth defect. It’s more than a day or a few weeks in the hospital. It’s more than 1 surgery. It’s every single moment in a cherub’s life. Every single one. I know this because I lived it.

And I know over 2200 other moms who have lived it too. Who understand. Who didn’t learn from book or stories but who lived it. Parts of it or all of it. They understand. They are the moms and dads and children of CHERUBS.

http://www.cdhsupport.org