Hydrocephalus Awareness – Baby Klaus

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a picture of baby klaus

Baby Klaus: Untreated Hydrocephalus

You may have heard about Baby Klaus in the news recently. Ten months ago, he was born with hydrocephalus in El Paso, TX.  For unknown reasons, he was not treated with the standard surgical placement of a shunt for hydrocephalus – a life-long neurological condition with no cure – but sent home and his parents were given little hope that he would live.  He has not only survived but has done so under extraordinary circumstances.  His head is three times the normal size for an infant of his age and the increased pressure on his brain has affected development.

It is common to see images of children with untreated hydrocephalus similar to Baby Klaus in developing countries and in the U.S. prior to the invention of the shunt in 1952; but since that time in the U.S., hydrocephalus is treated surgically despite many suffering from shunt failures that require repeated brain surgeries simply to live.

Fortunately for Klaus, his parents sought help from Sheri Burdine, a former Hydrocephalus Association  partner and founder of the support group Hydro Angels Over Texas, who arranged for his care by a pediatric neurosurgeon David Jimenez, MD in San Antonio, Texas. He is now receiving treatment for his extreme condition.  The road ahead is still uncertain for Baby Klaus.  It is difficult at this early stage to predict the challenges he will face, but the parents now have hope for their baby, according to Burdine.

The tragic story of Baby Klaus dramatically underscores the importance of hydrocephalus awareness.  It is being reported in the media as a rare condition.  Actually it is a common medical condition and there is a great need for better treatment options and increased medical research.

Hydrocephalus occurs in one to two births in every thousand and it has been estimated that up to 5% of Parkinson’s and Alzheimer’s patients are actually misdiagnosed and have hydrocephalus.  It can also be caused by traumatic brain injuries such as those seen in Iraq war veterans who have experienced concussive explosions. Yet outcomes for the treatments of hydrocephalus are not well studied and medical treatments for this common condition vary based on medical training.

Sadly Baby Klaus could be the catalyst needed for all people affected by hydrocephalus to tell their story – to their neighbors, to the press and to their congressional representatives.  A multi-billion dollar medical burden on our society should not be left to the affected, parents and loved ones to solve. Our government and the National Institutes of Health must make hydrocephalus a priority to be addressed.

We urge you to act to help increase the volume of the message – “there must be improved treatments and a focus on a cure for hydrocephalus.” No child born in the United States today should be left untreated for hydrocephalus and together we can raise our voices, in honor of Baby Klaus, to let our government and society hear our plea for increased medical research and awareness.   Please contact your Congressperson or Senator.  Let him or her know about Baby Klaus and tell them why you care.  Here are some resources on how to write to your congressional representative.

36 Comments for : Hydrocephalus Awareness – Baby Klaus
    • Jummai
    • May 3, 2018

    My elder sister’s son, 5months old Julius has just been diagnosed with hydrocephalus in FMC Yola, Adamawa State. Please pray for him. For advice please 08134980445

      • latiek debardlabon
      • October 18, 2018

      I pray he will be ok I myself was born with hydrocephalus he will pull through trust me I live with it and can live a normal life .I currently still have the shunt still currently
      Work in the medical
      Field as well every will be find god bless you and your family.

    • Sarah Smith
    • July 9, 2017

    Its crazy how I thought I was alone. I didn’t realize how many people had babies with this condition. It makes me feel better. I have a 4day old who has it. He just had his shunt surgery like 2-3 days ago. I feel guilty cause I blame myself. So when I found out he’ll have this for the rest of his life, just breaks my heart. So pray for me.

      • Nicole
      • March 23, 2018

      Sarah, I have had hydrocephalis since birth and I am now 44yr old. Have hope that with a solid medical team it will work fine. My challenge is I suffer from 3 day headaches. Sending my best for your precious little one

      • Michelle
      • October 3, 2018

      Never blame yourself guilt is a useless emotion and it keeps you stuck my daughter has her baby who was just diagnosed I pray every day

  1. I have a son. Liron by name. He was diagnosed of hydrocephalus after few months i gave birth to him. Thank God for my husband who noticed some of the signs and symptoms. We took him to a neuro surgeon who quickly took him up and a brain surgery was performed on him using SHUNT. After few months, the shunt failed, my son was opened up and it was replaced. Till today, he is very ok and living with the SHUNT. Liron will be 4yrs old by Sept 29 this year. Thank God he is very well. I pray we find a lasting solution to the cause of this ailment in Nigeria to reduce the number of children living with disabilities in our society.

    • karen
    • February 6, 2011

    I had meningitis when I was two weeks old and developed hydrocephalus. I wasn’t diagnosed with it until I was 26 years old. I had headaches that made me scream and cry and I would throw up and then fall asleep. Seizures started at 15. When they finally xrayed my head at age 26, they said that so much of my brain was destroyed by the fluid in my head and I should be severely retarded. At age 32 they placed a shunt in my head, and I am now 54. The headaches are much better. My vision is affected some, but glasses make it ok. My hearing is a 10th of a second off, according to one of my doctors. I have two grown kids. My first child was born with anencephaly (absence of the brain and top of her head). God bless all of you.

    • Arianna
    • January 1, 2011

    My first thoughts on this sweet, precious baby is why did it get to that extent? I know the parents are uneducated and the doctores said what they said. But I still don’t understand why, WHY this happened. I cried when I saw this baby and I pray, pray, and pray that God will give this baby chance to live a life of happiness and fullfillment. I have hope as I have hope for my own child and other children with any condition. I’m a mother of a 7 year old girl with congental hydrocephalus. She is fortunetly doing good, besides seizures, venous malformation in the brain and eye globe, and a abnormal looking vein in the back of her brain( similar to a AVM and is a slight risk of hemmorage)-sounds scary and it is. she was diagnosed with all this when she was 2 years old. She was diagnosed inutero 30 weeks with hydrocephalus. We don’t know why she had formed hydrocehpalus. She is a walking, talking like she doesn’t have it. She does have some mild delay but there is a lot of hope for her. She’s pretty smart and is very loving and nurturing. God has blessed her so much and us, despite her conditions. I recently just had a baby boy and what’s amazing is that his head is just as big as hers when she was born! I’m thinking I’m going to ask the pediatrition what she thinks. I’m just a bit nervous since Hydrocephalus can show up at any stage of life. Before my daughter was born the doctores said to expect her life expectantcy to be anywhere of dying when she’s born up to a year. This was devestating to hear. When my daughter was born the doctor said to wait for the shunt placement, at the time of birth she looked good.Well, we waited until she was showing signs of something going on. She was having sunset eyes, nystagmus, projectial vomiting at 6 weeks of age. I wish she had got the surgery sooner as of now she still has nystagmus and some visual problems but can see just fine without glasses. Her optic nerves are small as well but like I said shes doing quite well.If anyone has any questions and would like to contact me my email is arimmabon@yahoo.com.I’m in the Southern California area. Gob BLess you all!!!

    • Kelly
    • December 30, 2010

    Unreal that a child in the US is sent home with severe hydrocephalus untreated. Shame on our system!

    Fortuantely, my son received his VP Shunt at 22 days old due to being born with HYDRO.

    My God help this baby and his family!

  2. My heart goes out to this family. We have a 7 yr old son that was born at 35 wks with congenital hydrocephalus and shunted at 3 days old. He was diagnosed when I was 19 wks pregnant, that was the worse day of our lives. We were sent to an OB specialist that said he was so severe that they were pushing for us to terminate my pregnancy. We thank god every day that we did not listen to them. Yes he is very delayed, and also has seizures, but he is the happiest boy in the world. My prayers are with you in this long journey, but always remember you are not alone and we are all here for you. If you ever need someone to talk to, please e-mail me. spcralley@yahoo.com

    • Teri Ellett
    • December 27, 2010

    I was born with hydrocephalus and was 28yrs. old when diagnosed. I was called dumb, stupid, lazy for 28yrs. Then I started having headaches then they discovered the hydrocephalus. I was rushed in the hospital for my first shunt and have had 4 shunt replacements in the last 20 years. Most people take my medical condition in mind then I forget things .

  3. My 14 yr. old son was shunted at 5wks. He has not had a malfunction yet but has had 3 shunt-related surgeries since. I remember those first few weeks like it was yesterday. It was a nightmare, I call those days the “dark days”. My pediatrician too didn’t think anything was wrong with my baby at his 2 wk. check. Although mother’s intuition told me something was wrong. For 5 wks. I lived with fear and denial, knowing in my heart something was wrong but denying I could be right because of the reassurance of the doctor. At 5 wks, with his head enlarging by the hour, scalp veins bulging, eyelids swollen, there was no more denying for myself or the doctor. He took one look at him and said, “are yout hinking hydrocelphalus”? he was shunted the next day. I still feel so much guilt for not acting sooner. Reading the comments of other parents I realize FINALLY, I am not the only one who lived in denial. Thanks for sharing your stories.

  4. My son was born with congenital Hydrocephalus, not diagnosed and sent home like everything was alright. Pediatrician never saw a problem with his big head because he was a big baby. At 41/2 months of age a nurse at the Health Dept. in Raleigh saw immediately that there was a problem and would not give him his shots. I went to the Pediatrician who got him a cat scan done immediately. Now all of a sudden, everything was IMMEDIATE. The very next day we were at Duke Hospital talking about reconstruction of his skull and shunt placement. By the grace of God and the excellent neurosurgeon, my son is now 24 years old and has never needed a shunt revision. He has a few learning disabilities but nothing that he can’t live with.

    • Amy
    • December 23, 2010

    How can this be possible in today’s society that a child in need of medical attention can be sent home to suffer? Totally unacceptable! These Dr’s should be liable.

    My prayers go out to the family who have the strength to advocate for their baby. My daughter was diagnosed with hydrocephalus at two months of age and it really should’ve been detected at her one month well-baby check. Although she has come so far in the last ten years I regret not pressuring the Dr’s further when I felt something was wrong. If I had her issues may not have been so severe. However we can’t dwell on the past, just focus on the future and what we need to do to help our daughter.

    We just got home from our annual caroling for the cure, a fundraiser we do to raise money for the hydrocephalus association in our neighborhood. We will say a special prayer for Baby Klaus tonight.

    • Patty
    • December 23, 2010

    My heart goes out to this family. We have a 7 yr old son that was born at 35 wks with congenital hydrocephalus and shunted at 3 days old. He was diagnosed when I was 19 wks pregnant, that was the worse day of our lives. We were sent to an OB specialist that said he was so severe that they were pushing for us to terminate my pregnancy. We thank god every day that we did not listen to them. Yes he is very delayed, and also has seizures, but he is the happiest boy in the world. My prayers are with you in this long journey, but always remember you are not alone and we are all here for you. If you ever need someone to talk to, please e-mail me. spcralley@yahoo.com

    • Yeager
    • December 23, 2010

    How awful that this family did not receive the proper guidance and care. My daughter is 6 and is shunted due to prenatal meningitis. When the doctors discovered it, they took a wait and see attitude and measured her head everyday before subjectng her to shunt surgery. They also waited because miraculously, she wasn’t showing any symptoms of hydrocephalus besides an abnormally enlarged growing head. After a month of careful observation, her head kept growing so they recommended shunt surgery. That first one is terrifying. At the time, I viewed it as a permanent device being placed in my innocent, perfect newborn, scarring her brain for life. And putting her through brain surgery on her due date!!!! It’s devastating. If she had doctors who were 50/50 about the shunt surgery as Kalus’ doctors were I would have probably made the same decision as his parents.
    Some people might think, didn’t the parents see that his head was abnormally large? I must confess, that we took photos of my daughter the night before her shunt surgery, with her bulging forehead and at the time, I only saw my beautiful baby, not a bulging forehead. When I look at that photo now, I think yikes! How could I not have see that bulging forehead and done the surgery even sooner?
    My heart breaks for that baby and family, because if he had received the proper care, odds are he would have been a mostly typically developing baby.

    • Yeager
    • December 23, 2010

    How awful that this family did not receive the proper guidance and care. My daughter is 6 and is shunted due to prenatal meningitis. When the doctors discovered it, they took a wait and see attitude and measured her head everyday before subjectng her to shunt surgery. They also waited because miraculously, she wasn’t showing any symptoms of hydrocephalus besides an abnormally enlarged growing head. After a month of careful observation, her head kept growing so they recommended shunt surgery. That first one is terrifying. At the time, I viewed it as a permanent device being placed in my innocent, perfect newborn, scarring her brain for life. And putting her through brain surgery on her due date!!!! It’s devastating. If she had doctors who were 50/50 about the shunt surgery as Kalus’ doctors were I would have probably made the same decision as his parents.
    Some people might thnk, didn’t the parents see that his head was abnormally large? I must confess, that we took photos of my daughter the night before her shunt surgery, with her bulging forehead and at the time, I only saw my beautiful baby, not a bulging forehead. When I look at that photo now, I think yikes! How could I not have see that bulging forehead and done the surgery even sooner?
    My heart breaks for that baby and family, because if he had received the proper care, odds are he would have been a mostly typically developing baby.

  5. My Son had hydrocephalus as well…much prayers and by God Grace he no longer has it…. yes I know people say no cure but this is true as a Christian I believe in the Lord and he can do Miracles. I pray for Baby Klaus for a Miracle. Prayer is Powerful.

    God Bless

      • Tracey Vaughn
      • April 12, 2018

      Hi I’d they take the shunt out of his head my son also was born with it and shunted at 5 weeks old I was also told he didn’t have it anymore but the shunt and tube is still there he is 26 now but the tube looks so tight I don’t no what to do

    • Karen Goodwin
    • December 23, 2010

    My son was born with congenital Hydrocephalus, not diagnosed and sent home like everything was alright. Pediatrician never saw a problem with his big head because he was a big baby. At 41/2 months of age a nurse at the Health Dept. in Raleigh saw immediately that there was a problem and would not give him his shots. I went to the Pediatrician who got him a cat scan done immediately. Now all of a sudden, everything was IMMEDIATE. The very next day we were at Duke Hospital talking about reconstruction of his skull and shunt placement. By the grace of God and the excellent neurosurgeon, my son is now 24 years old and has never needed a shunt revision. He has a few learning disabilities but nothing that he can’t live with.

  6. I don’t understand this at all! The article says, “He born was with Hydrocephalus…”. To me that implies that it was known. So, why would anyone let that poor baby suffer without any treatment for so long?! That’s extremely sad and disappointing!

    • Christina Brown
    • December 9, 2010

    It is so sad to me that a child had to deal with Hydro for so long and living without treatment. Hydrocephalus needs to be something main stream because of how many people it effects. Parents, read up and be proactive about your child’s health, it could make all the difference to their health.
    If anyone is colorado would like to connect about Hydrocephalus please contact me at christinaandroy@yahoo.com

    • Andrew
    • December 9, 2010

    I was diagnosed with hydrocephalus at age five. I am now eighteen and living a very normal life. I have been very thankful for the medical staff at Duke Hospital. I had problems with the first few shunts i had failing, and one causing infection, but finally got one to work properly. That shunt lasted for 10 years until i grew out of it and the tube broke in my neck. The scar tissue that had built up around the tube over the years provided enough passage for the fluid to continue to drain but my doctors stated it wouldn’t have lasted long. Thankfully my mom noticed a change in my attitude and made me go for a check up and sure enough it was broken. Surprisingly i had gone for a CT scan just two months prior for my mom’s suspicion then and nothing seemed to be wrong. When the doctors got my old shunt out and examined it closer they also found a pinhole in the backside of my shunt that could have been the reason my attitude was slightly off before but not to that extreme. I remember seeing my mom crying in the hospital so i can’t imagine how baby Klaus’ parents must feel. I send my best wishes to them and all the other families that have a loved one with hydrocephalus. I can’t say enough how much i feel for all of you. I wish you the happiest of holidays!

      • Andrea weaver
      • October 25, 2016

      Hello Andrew, my name is Andrea, and I have 18-month-old son with hydrocephalus. I was very touched by your story and the relationship it sounds like you have with your mother. I was wondering if it would be OK if I asked you a few questions about your hydrocephalus in hopes that it will help me make my sons life better. Would you mind if I emailed you a few questions or maybe I could talk with you and your mom on the phone sometime ?

    • Heather
    • December 9, 2010

    WOW–seriously, I don’t see how this poor baby was NOT treated. Even if an ethics board ruled 50/50 on whether or not to do the surgery, ultimately, if there is a neurosurgeon willing to do the surgery, it should be up to the family as to whether or not that is something they want to pursue. It just goes to show that education is the key. Parents have to be their own and their own kiddo’s advocate. You can’t always take the word of doctors, even if they mean well.

    My six month old daughter has fetal hydrocephalus. We found out through an ultrasound at 20 weeks. I had an amniocentesis and ultrasounds every 2 weeks. The first specialist we saw gave us the doom and gloom scenario. He had to give us all the options, but one was termination, and we really felt that he was encouraging us to take that route. But we couldn’t do that to our little girl.

    After several miserable ultrasounds, doctors recommended we deliver her early (on May 29, 2010 at 32 weeks, 8 weeks early) to be able to place her shunt. I had steroid shots to mature her lungs since a baby’s lungs usually aren’t ready for the outside world until at least 35 weeks. She had a shunt placed when she was 3 days old and then spent 56 days in the NICU, but the length of the stay was mostly related to her prematurity and her ability to take in enough food on her own as opposed to through an gavage (down her nose) tube. She hasn’t had any complications with her shunt (yet).

    My beautiful girl is now 6 months old and thriving. She recently started rolling over, smiles, grasps objects and transfers them from one hand to another, tracks objecs and people–so far, she’s doing everything she should be for her age. That’s the thing about hydro–you never know how it will affect one person versus another. I’m now convinced delivering her as early as we did, though it was hard, probably saved her from a significant amount of brain damage. She does get weekly physical and/or occupational therapy, but she’s doing fantastic! In fact, I have an almost 3 year old as well, and I can’t think of anything she was doing at this age that my kiddo with hydro is not. So parents out there–take heart! Babies with hydrocephalus can do quite well! We know she will eventually have to have revisions due to failure and/or infection, but we have every hope for her that she can lead a normal, productive life. Hydrocephalus doesn’t have to define who she is. She’s just our baby, with her own personality, who just so happens to have hydrocephalus. We are determined that, while hydro will always be a part of our lives now, it will NOT be the only thing.

      • Moya
      • February 1, 2019

      Hello Heather, my name is Moya Palombo. My son and his wife have just received the news that their baby has 4mm of fluid on the brain. This was their 3 month scan. I also believe the actions you took to have your daughter earlier were the best option. I hope and pray this message gets to you. It has been a long time since you posted your comment. Can you please contact me with any advice you can give us. I am from Scotland

    • Lydia Ingram
    • December 9, 2010

    I too have a 10 yr old son that was born with hyrocephalus, just like Baby Klaus, my son was sent home numerous amounts of time by Doctors as well. It took them two years later for them to finally decide to place a shunt in. His head had already grown too big and had a fluid pocket built up on the side of it. After seeing his enlarged head although knowing since birth that he had it, they did nothing until it was too late and it had already effected him. To this day, he is in a wheel chair and requires alot of visits to see the neurosurgeons for shunt revisions. Overall his health is fine and I just thank God for his health and well being. This is a serious and life threatining condition that does need to raise some awareness around the world. I am here for any moral support.

    • Kathleen
    • December 6, 2010

    I was born with hydrocephalus due to a congential brain tumor in 1955. It was not discovered until 1990 when I was given a CT Scan for an unrelated problem. When I was born my large head was thought to be due to the large heads in my mothers paternal line and apparently I grew up fairly normally(I beg to differ). A shunt was placed in December of 1990 and so far so good, but this condition needs to be talked about and shared; it is not as uncommon as you might think.

    There is hope for baby Klaus and we must all think of him and those like him when we share with and advocate for those with this condition. There is always hope.

  7. Greetings, I thought I would put my 2 cents in. I am the one the Aunt contacted about “baby Klaus”. I have to be honest this is the most sad situation I have ever experienced. So you know, the Doctors did know he had hydrocephalus, and an ethics board ruled 1/2 & 1/2 to do the surgery. The family was not educated on the topic and the experience scared them to death. They took their baby home thinking there was nothing they could do, but wait for the baby to die. It is reported, El Paso did not have a qualified Neuro doctor, though many children in El paso have hydrocephalus and shunts. However, it was reported that some of those children have died after surgery? It is hard to say how this happened, but I assure you his parents love him and did their best in a very bad situation. They “believed ” the doctors when they told them he would only live less than a year.
    This cause has made me more determined to get the word out! Today “baby Klaus” is having his first reconstruction surgery. I had to leave before the 6 hour surgery was over, but I was told he was stable before I left. I assure you he is in the best hands, doctor Jimenez is a true “angel”, so says many of his past patients parents.
    Hydro Angels Over Texas is financially, and spiritually supporting this family during their time of need. Please vist my website for updates. Together we can make sure no other baby Klaus” is left to suffer a slow death. Thank you for allowing me to share.

      • Jummai
      • May 3, 2018

      Good morning. My nephew has just been diagnosed with hydrocephalus. Am not happy about his condition. Pls advice needed

    • Danielle Covarrubias
    • December 5, 2010

    I don’t understand this at all! The article says, “He born was with Hydrocephalus…”. To me that implies that it was known. So, why would anyone let that poor baby suffer without any treatment for so long?! That’s extremely sad and disappointing!

    • jennifer
    • December 3, 2010

    This photo/story is shocking, alarming and terribly sad. It’s so difficult to fathom and comprehend how this diagnosis could not have been made earlier.

    • Jennifer
    • December 3, 2010

    My daughter is now 14 rs old and is living with the affects of undiagnosed menengitis which led to her developing hydrocephalus. Her shunt was placed when she was 9 months old. When she wasw 8 it failed. It took 3 trips to the emergency room for the doctors to think to put the chest and head xray together to find her shunt had broken in her neck. She immediately went into surgery to have it replaced. Two weeks later she was rushed back to the er for high fever and vomiting. He shunt developed an infection. She had to spend two weeks in the childrens hospital with her shunt remoed and a tube sticking out og the top of her head until the infection was removed from her body and then her shunt replaced. To have to sit there in the hospital room and watch your child helplessly is not something I would wish on anyone. I understand there is no cure. There needs to be more research and awareness on this subject. My daughter now learns basic life skills in a classroom and has multiple therapies during the week. She is 14 but she has the mind of a 4 to 6 year old. If the communities are made more aware, if the signs and symptoms are put out into the world as much as the medication commercials on television, I believer that more people will become aware and more open to noticing symptoms in their own child or a child in their life. Early detection is key. We need to find a better solution for the patients suffering from this more than common disease. Thank yu for listening to my daughters story.

    • Amanda Klebe
    • December 2, 2010

    It is unbelievable to me that this poor baby’s doctors did not do anything to help him. They should not be allowed to continue to practice. Seriously, there has to be some malpractice law against them just sending him home and saying he won’t survive, when he could have been helped. If they themselves could not have helped him, they should have sent him somewhere where he could have been helped. Thank God his family finally got help from somebody, but it is too bad that he has suffered needlessly for so long. I hope that he continues to improve and has a chance at a somewhat “normal” life. This is really a heartbreaking story.

    • Laura
    • December 2, 2010

    I can relate to this. My son was not born with hydro, but developed it sometime between his 1st and 2nd year (reasons unknown). He had all sorts of delays – gross/fine motor, speech, behavioral…..you name it. We would take him to his pediatrician with his ever-growing head and they would tell us everything was “just fine”…or “guess he started the terrible twos early”…Hunter’s Hydro was not discovered until by accident after he turned 3. He had seen a developmental pediatrician who stated he was dyspraxic with verbal apraxia….(one MD thought he was deaf because of his lack of impulse control, but hearing tested normal)…that dev. ped told us to see a neurologist…..the neurologist took one look at his head, measured it and told us that it was FAR above the 97th percentile…quite large (His pediatrician siad he “always had a big head, so there was no need to worry). He had an MRI and a week later we heard the news.

    I sympathize with these parents. To be sent home and told to just deal….when you can see and KNOW something is wrong. To see your child violently lash out at you and others…barely able to walk, barely able to talk…and the pediatrician shrugs you off saying, “he will grow out of it”….I know the pain they have endured….as a parent of one of these cases, you just hope that the brain has ample opportunity to grow back and that the dammage isn’t too severe….when it could have been prevented to begin with. We now believe that Hunter’s outbursts were most likely due to the pain he was enduring in his head. Here’s to Baby Klaus making up for lost time and rebounding beyond all expectations.

    • Torrey
    • December 2, 2010

    Hello,

    Is there a address we can send something to the parents? My wife has a Shunt in her head since she was 5 years old, and now she is 28. It is an amazing what Dr.’s have done with this horrible medical issue.

    Thank You,
    Torrey Anderson
    downn99@aol.com
    805-432-6248

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