Brian and Leighanne Littrell Urge Parents to Follow Their Instincts
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In late November and throughout December, Backstreet Boy singer Brian Littrell and his wife Leighanne were living a nightmare as they watched their 6-year-old son Baylee Thomas Wylee succumb to a mysterious illness. While he was ultimately diagnosed with atypical Kawasaki Disease, the diagnosis did not come without significant pressure from his parents. The couple have spoken out about their ordeal to OK!, and their message is simple. “If you feel like something is wrong, follow your instinct,” Leighanne says. “Doctors don’t know everything.”
Around his birthday on Nov. 26, Baylee fell ill with diarrhea, nausea and enlarged lymph nodes. A trip to the doctor yielded a diagnosis of strep throat and a prescription for Amoxicillin, but his condition continued to worsen. While the family was in Kentucky celebrating an early Christmas with Brian’s relatives, Baylee spiked a fever of 103-degrees and developed blisters in his throat as well as a rash. A return trip to the doctor resulted in a diagnosis of hand, foot and mouth disease based on the blistering, while the rash was attributed to a reaction to the antibiotic.
Suspecting something more was to blame, Leighanne recalls that “the rash looked like a chemical burn” and had gotten so severe that Baylee’s eyes “were swollen shut.” Feeling “frustrated” because “there is no way you can believe a doctor who is telling you to go home and this will go away on its own,” the couple took their son to the emergency room — only to be met with more resistance.
“Baylee had said he had been feeling these little heart murmurs — he calls them ‘heart sparks.’ So Brian and I wanted him to have an echocardiogram. The doctors rolled their eyes, like, ‘They’re just being paranoid parents.’ But the results came back and showed damage to his coronary arteries, and inflammation. He was finally diagnosed with atypical Kawasaki disease.”
Click below to read about Baylee’s prognosis.
Baylee underwent an intravenous immunoglobulin (IVIG) treatment to repair the damage to his heart, and the couple should know in six to eight weeks whether it was successful. “It’s the only shot to cure Kawasaki,” Leighanne notes. While he is currently “running around in his Batman costume, feeling so much better” and displaying a “fantastic” attitude, Baylee is still somewhat restricted in what he can do – which is tough for a 6-year-old. “The other day, Baylee said, ‘I just want to be normal, Mommy,’” Leighanne shared. “Right now, he can’t do a lot of cardiovascular activity, but he can practice his karate.”
“He also has to stay away from people who are sick because his immune system is weak.”
Determined to turn the experience into something positive, Leighanne feels that the doctors who handled Baylee’s case “would never run an echocardiogram unless we insisted.” To that end, the couple hope to help other parents who push for testing that the medical community deems unnecessary. Adds Leighanne,
“We’d like to set up a fund for children who need extra medical testing, when insurance won’t cover it. I hope our experience can help another family.”
Source: OK!
- Posted on Jan 2, 09 at 3:00PM
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- 46 Comments
January 2nd, 2009 at 3:37 pm
How scary for their family. I simply can’t imagine the feeling of having a child that ill and I hope I never have to. I’ve done a lot of volunteer work with children with cancer and in a children’s hospital in my local community and I’ve learned through that experience that you, as a parent, are always your child’s best advocate. If you think something is wrong, then keep pressing for answers. The number of diagnosis that come about only after loads of doctor’s visits and tests is way up there. I’m glad to hear that the Littrell’s stood on Baylee’s side and got their son the treatment he needed. My thoughts and prayers will remain with them in the coming weeks and months.
And what a cool thing, setting up a fund to help other families in similar situations that may not be as fortunate as they are.
January 2nd, 2009 at 3:40 pm
Knowing Brian’s medical background, surely those doctor’s should’ve checked out if there was a heart problem there! That’s shocking that they were dismissed so many times! The older sister of one of my daughter’s friends actually came very close to dying from meningitus a few years ago and her parents were told she wasn’t a meningitus case because she didn’t have a rash! Seriously. All health guidance tells you that not all cases show with a rash, but still, the family were sent home. She recovered, but it could so easily have gone another way. Sorry, that was a bit of a rant, but this kind of thing incenses me!
Best wishes to Bailey, I will be thinking of him during this difficult time. xx.
January 2nd, 2009 at 3:46 pm
My apologies, I spelt Baylee’s name wrong! I’m sure we’re all thinking of the gorgeous little man and his parents, with the hope that 2009 will be full of good news for them!
January 2nd, 2009 at 3:55 pm
I agree with Phoebe, knowing Brian has had a lifetime of serious heart complications, surely it would have been wise to check Baylee out for this kind of then when he was first taken sick. Its really frustrating when you aren’t taken as seriously as required by the medical professionals, in whom you are meant to trust.
I wish Brian and Leighann and most importantly little Baylee all the best and hope everything settles down for the lil guy real soon.
January 2nd, 2009 at 4:11 pm
Sadly I believe this is the same disease that John Travolta’s son just died from. I had never even heard of it. Awareness is always a good thing.
January 2nd, 2009 at 4:53 pm
Wow, that is horrific. I am glad he was treated and is out of the hospital now.. I couldn’t imagine going through that with my children!
January 2nd, 2009 at 5:35 pm
John Travolta’s son’s death is horribly sad… but a seizure caused by falling and hitting one’s head in the tub does not sound like Kawasaki… it sounds like epilespy to me.
Just because Jett was diagnosed with the disease when he was young, doesn’t mean that’s what he died of. That’s what the media is assuming.
Jett seems to have had a host of problems in his young life. My prayers are with his family.
January 2nd, 2009 at 5:55 pm
I can’t imagine how scary this experience must have been for the Littrell family. I’m glad to hear that Baylee is out of the hospital and doing better. I wish this family all the best, and my prayers are with Baylee – I hope the results of his procedure turn out well.
January 2nd, 2009 at 6:02 pm
Great article and much needed! I have a 5 month old daughter and it really seems that doctors don’t think. They just go through the motions. Everyone out there needs to take a few minutes and research, research, research something before they just do it because the doctor said. Especially when it comes to vaccinations!
January 2nd, 2009 at 6:54 pm
I’m glad Baylee’s parents knew how to be good advocates. I work as a patient advocate and I see sooooo many people who are afraid to speak up to their doctors! I would like to point out though, that if Brian’s heart problems as a child are not something that is genetic, the doctors wouldn’t consider it b/c there wouldn’t be an increased chance of Baylee having it. The difficult thing about Kawasaki disease is that its symptoms are that of many other illnesses, illnesses which are more common for children to have than Kawasaki. My husband had Kawasaki as a child but it took a little while to get diagnosed because in medicine, it usually makes sense to investigate the most common possibilities first. I’m not saying the doctors were right to initially not want to do an echo (esp. since Baylee was complaining of heart murmurs), but just to not forget that there is usually a rational to why doctors do what they do and since they’re human, it’s impossible for them to guess things correctly the first time all the time. That’s why it’s so important to be an informed patient/parent! You know yourself or your child better than anyone
January 2nd, 2009 at 6:54 pm
From my understanding, Kawasaki disease does not give the child seizures, but rather all of the symptoms — in addition to a fever which lasts for longer than four days — that Brian Littrel was talking about regarding his son. Kawasaki disease also tends to affect young boys, although occasionally it can affect girls and a few who are older. This is the second or third time I’ve heard about Kawasaki disease in a few months. I think it’s more prevelant than what is being previously thought. I’m thankful for Brian’s son being fine, yet am saddened to hear of the death of Jett… I’m sorry, though, but I do not believe it was Kawasaki disease.
January 2nd, 2009 at 7:05 pm
I’m glad they listened to their instincts. how tragic! it pays to stand by what you believe in! sometimes doctors take things for granted,and then all they have to offer is an apology when something terrible goes wrong. sometimes they should give parents the benefit of the doubt,listen,and try not to be so technical.
Researching helps alot too. and stay aware. if something doesn’t seem right,it usually isn’t. we were given maternal instincts for a reason!
January 2nd, 2009 at 7:34 pm
I agree completely that parents just know and that this small still little voice must be taken seriously by medical professionals. For us when our 10 year old(turns 11 next month) was diagnosed with leukemia 4 years ago I just KNEW in my heart that’s what he had(even though he didn’t present with the typical symptoms) and I told them that was my gut-feeling and to check for it….many tests proved my suspicion to be likely and a bone-marrow biopsy hours later confirmed it(and our worst fears). Luckily in our case though they DID listen and did the tests. They said afterwards they were shocked at the results as he didn’t appear to have it and even asked me how *I* knew as they never would have suspected it.Now he’s thankfully in remission, but a mother KNOWS; it’s like a whispering from God to her heart….
January 2nd, 2009 at 7:52 pm
Wow that’s so awesome that Baylee’s parents had the wisdom and instincts to keep pressing. And I love how they want to start a fund for other parents in similar situations.
January 2nd, 2009 at 8:43 pm
I’m so glad that Baylee’s parents trusted their instincts about this. My younger sister was diagnosed with Kawasaki when she was three years old and it is a very scary thing. At first the doctors told my parents that she might just have pneumonia, and a couple of days later her fever went up to 104 and she was covered in a rash. She spent three weeks in a childrens hospital to be treated. She is 17 now and still has a slight heart murmur but other than that is in good health. This is a very serious disease that I believe needs more awareness and attention. Praise God that the Littrell’s caught it in time and I wish Baylee a speedy recovery!
January 2nd, 2009 at 9:09 pm
When my son was 14 months old, he had a multitude of syptoms including a sore throat, fever and double ear infection. His Pediatrician was on vacation with his family, so we saw the doctor filling in for him. My son was prescribed Augmentin and through the treatment course developed the same rash that resembled a chemical burn. After 4 emergency room visits, the doctors finally determined that he was having an allergic reaction to the meds. Being that my son was only 14 months, he couldn’t yet speak. Now, I wonder if it was this? His is turning 3 in February and we haven’t seen anything else that we can relate back. We will definitely be calling the doctor Monday morning. It is very scary. I am glad Baylee is doing well and wish the family all our best!
January 2nd, 2009 at 9:25 pm
This little angel is identical to his father!!!
January 2nd, 2009 at 9:27 pm
I’m really glad they caught this when they did!
January 2nd, 2009 at 9:36 pm
As a rheumatologist and mom I can see both sides of this story. But in all fairness, Kawasaki disease, and many other autoimmune diseases, are very rare and often hard to diagnose and can masquerade as other more common diseases/infections. I think people should refrain from making hurtful comments like “doctors don’t think” – all we do all day long is think – about how to take care of our patients the best we can. I am glad that Baylee’s condition has been diagnosed and is being treated appropriately. Remember that hindsight is always 20/20.
January 2nd, 2009 at 11:20 pm
Kawasaki’s disease runs its course, which can take a few days or a few weeks. It causes inflammation in the entire body, from organs like the spleen to the coronary arteries. The strong force from the blood pumping through them can cause aneurysms. IVIG (gamma globulin) is not a cure. There is no cure. It’s not a very common disease, and unfortunately many pediatricians don’t recognize the symptoms right away, especially if it’s atypical. The most common symptoms are a high fever from 102 and up that won’t decrease with tylenol, a “strawberry tongue”, the nastiest rash in the groin area unlike any diaper rash you have ever seen, conjunctivitis, and overall malaise. Children under 5 and mostly boys are affected, the cause is still unknown. It’s important for pediatric residents and interns to see children with Kawasaki’s disease so that they are familiar with the presentation. My son was almost two when he was diagnosed, and it was through the symptoms and a simple blood test, called a SED rate, which shows if the inflammation level in the body is abnormally high.
January 2nd, 2009 at 11:23 pm
John Travolta’s son reportedly had this disease as a child, and they are reporting that a seizure, fall and head injury probably caused his untimely death. May God Bless Baylee, Jett and their families as they try to cope and heal.
January 2nd, 2009 at 11:32 pm
Ana I know exactly what you mean. Yes, some doctors make mistakes but I believe most of them are doing their best. I think people become doctors because they care about people.
January 2nd, 2009 at 11:43 pm
My son had Kawasaki’s when he was three. It started as strep throat on Sunday night, but I called my doctor’s office every day starting Tuesday when his fever was still over 102 degrees. He was not sent to the hospital until Friday…this is when all symptoms were present and his fever was still 102 degrees. We were very lucky to have a great doctor who diagnosed his illness in her office and then sent us to the hospital. We lived in a metro area and the hospital is one of the best in the country. The doctors were impressed that my son’s doctor diagnosed the illness. He was lucky, his illness was caught early and he has no heart problems (he’s now nine). The hospital and staff were great during his stay. It’s also a teaching hospital and we had medical students stop by to see our son. Kawasaki’s is rare and the doctor’s wanted all medical students on this rotation to “see a classic case”. I hope those doctors can help others. It makes you realize how rare it is when there are thousands of patients and the students are have a meeting about your child. Yes, several came by to check him out and make notes. I only share my story to say, most of these cases end very positive. We are blessed this is the most difficult medical problem we have faced.
January 3rd, 2009 at 12:33 am
Aw, I saw them on Larry King Live tonight… Baylee looked so great for a child who’s been through so much in the past few weeks! What a ham he is :O)
And to Ana — I know I didn’t make the “doctors don’t think” comment, but when I mentioned earlier about doctor’s missing diagnosis and that a parent is a child’s best advocate… it’s honestly nothing against the doctors. I know your jobs aren’t easy either. But as a parent, you know your child and unlike a doctor who doesn’t see that child everyday you know when things aren’t normal. You know when your child is paler than normal and when your child is more lethargic and just not acting right. I’ve heard of so many children being diagnosed only because parents kept coming back for second and third and even forth opinions. On the other hand doctors often see the things that we as parents who see our kids every single day miss.
I just think it’s important as a parent to not give up when you really think something’s wrong.
January 3rd, 2009 at 3:14 am
Rachel- ITA! When I was a toddler, I had an extreme aversion to pretty much every food except for baby food, an aversion so bad I’d scream as if someone had tried to feed me fire whenever someone tried to feed me. Although I did tolerate baby food for the most part, that simply isn’t enough to sustain a toddler.
My parents took me to several different doctors to try to find out what was wrong with me, which, from the sounds of it, was h*ll on Earth for them. When it comes to difficult doctors, basically you name it, and they had to deal with it. Several times I was dismissed as a case of “failure to thrive”, and other times the doctors just thought my parents were over-reacting and what I had wasn’t that serios. In the meantime, my parents were forced to watch as their little girl became basically skin and bones. Had my parents not pushed for answers and trusted their gut feeling that there was something seriously wrong with me, I almost certainly wouldn’t be here today.
Thankfully my parents’ persistince paid off, and I finally recieved a diagnosis (basically, my mouth was oversensative to texture, taste, tempurature, etc., and it just wasn’t working correctly), which was thankfully easily treated with intense therapy.
To this day, the biggest piece of advice my parents usually give when speaking to other parents who are in a similar situation is “You have to be your child’s advocate at all times!”
January 3rd, 2009 at 5:27 am
Have to admit, I was a little shocked to see you’re still reporting about this, heh.
But yeah, saw the family on Larry King tonight and he looks almost 100% (though, I know looks aren’t everything, but just basing on what Brian was saying he looked like a few weeks ago…). And he’s such a dork too, just like his daddy! Total ham!
January 3rd, 2009 at 11:06 am
Poor little guy. Good thing he is doing better now. With knowing Brian’s medical background (as having been a huge Backstreet Boys fan for several years) I thought they would have checked Baylee for things like that. I know some weeks after Baylee was born there were rumors about him having some kind of heart condition but it got denied. To me the lil’ guy always looked sick, pale and skinny but every kid is different so you can’t say for sure he is sick just because of that.
January 3rd, 2009 at 12:35 pm
I am so glad that they were so persistant with getting an answer for little Baylee. Parents usually know 9 times out of 10 that something is wrong with their child whether doctors say so or not. Now, I just am really concerned with the Jett Travolta matter. I read where John said that they constantly had his carpets cleaned. Then I was interested in the disease itself so I googled it and looked at Wikipedia and it said that the disease is related to the chemicals in carpet cleaning: “Some studies have found associations between the occurrence of Kawasaki disease and recent exposure to carpet cleaning.” That really concerns me….maybe they were doing too much carpet cleaning?????
January 3rd, 2009 at 1:15 pm
I urge everyone to be a patient advocate – whether it’s for yourselves, your kids or your elderly parents. This is a wake up call we recently experienced with my 80 year old mother-in-law. The doctors may not be as astute as you might want to believe. We insisted on an echocardiogram and blood tests to check for ammonia levels. We Googled symptoms ourselves. We were always ahead of the ‘diagnosis’. Please listen to your instincts and look at all symptoms.
I am so glad this family was smart enough to insist on tests and more tests, especially for this active little boy! God bless them.
January 3rd, 2009 at 1:38 pm
Visit kdfoundation.org as this site has information and stories from those afflicted with Kawasaki’s disease. There are also studies being done on a continual basis at UCSD San Diego.
January 3rd, 2009 at 1:48 pm
“Some studies” are like saying “everyone else’s parents”. It’s an easy out. What studies and who did the work, or as Mom used to say “Whose parents so I can call them?”. I’ve seen those comments too and until I can see some the real research I’ll be my sceptical self.
January 3rd, 2009 at 1:51 pm
OOPs, I didn’t mean specifically studies about Kawasaki Syndrome, but those linking carpet cleaning with Kawasaki. Sorry if I was unclear.
January 3rd, 2009 at 7:46 pm
The carpet cleaning thing is what my husband’s pediatrician told my MIL when my husband was diagnosed with Kawasakis (he was about 18 months old I think). Thea, here is an article citing carpet cleaning as a potential cause and it cites other articles in the reference section: http://www.ncbi.nlm.nih.gov/pubmed/1614454?ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum .
Carol, I am not an Kawasaki expert, but everything I’ve read here seems to not show a connection between seizures and the disease. (Someone please correct me if I’m wrong!) I think in the case of Jett the media took that information and is jumping on it, but it doesn’t appear that Jett’s death and him having Kawasaki are related. Also, I don’t think it’s repeated carpet cleaning that can cause a problem but just one exposure, or at least that’s what my MIL said the doctor told her.
January 3rd, 2009 at 8:28 pm
I was diagnosed with Kawasaki Disease when I was 2 or 3–initially, however, they thought it was an allergic reaction to penicillin. I don’t think it had any lasting effects besides a fear of doctors and hospitals.
January 3rd, 2009 at 9:40 pm
My son was diagnosed with Kawaski Disease when he was an a month old and at the time they were still testing the disease because it was not common… they did the gamoglobin iv in his head… and today he is 14 and in perfect health… he barely even gets a cold.
I pray for Baylee and his parents…. They did the right thing by trusting their instincts
January 3rd, 2009 at 11:47 pm
Carol — I believe John and Kelly no of the relationship between carpet cleaning and Kawasakis and I believe, from what I’ve heard of their interviews that they think the frequent cleaning they did prior to Jett contracting the illness around the age of 2 had something to do with him contracting it. They don’t still clean the carpets that much.
Again, seizures and Kawasakis aren’t linked (at least, not as a long term effect). John has also said before that his son had a “developmental disorder” known as Kawasaki’s disease — Kawasakis disease affects the heart and is not a developmental disorder. My guess is that the initial diagnosis of Kawasakis or the severity of the illness itself is what originally sparked whatever “developmental disorder” Jett actually suffers from (you can speculate on that as much as you want). Many “developmental disorders” are set off right around that age (2) by illnesses. My guess is that the seizures are caused not by the Kawasaki disease, but are related to whatever “developmental disorder” John was actually referring to.
January 4th, 2009 at 12:05 am
I hope they really do go forward with their funding to help other parents. Most parents would not be able to afford additional medical tests if their doctors did not think it was necessary.
January 4th, 2009 at 1:23 pm
My now 1 year old daughter was diagnosed with Kawaski Disease Oct. 10/08 like this story it was a night mere doctor after doctor hospital visit after hospital visit all of them saying its just a cold like where did they get there damm med licenc. our daughter had a rash head to toe red blood shot eyes swollen throat red toung swollen hands and feet a very high fever for weeks and finally by the time she was diagnosed was really late into the desease her hands were already starting to peel. Since the late diagnose it has left her with a Aneurism on her main artier having an echocardiogram every 6 weeks our next appointment #4 is tommorow hoping for the best this time.
Our daughter was also born a month early making her very small being under 15lbs.
I dont wish this on anyone the stress is enough to drive you crazy.
Thank you for hearing a little part of my story
January 4th, 2009 at 1:43 pm
My daughter, who is now 27 had Kawasaki Disease when she was 5 years old. Normally the disease affects male children. It is very rare that female children get Kawasaki’s. She started out with symptoms of the flu but her fever was so hight ( 104) and we could not get it down. Her fingers and her toes turned blue and had blisters and pealing. After several trips to the Dr., she eventually looked in a medical book to figure out what my daughter had. We had to administer several baby asprin every 4 hours to thin her blood. I took her to a heart Dr. serveral times over a 4 month period to check her heart and make sure she was fine. She is perfect. Never suffered a seizure.
It was very scary for us because the disease is so rare. My heart goes out to the Lettrell Family.
Regarding the terrible loss of Jett Travolta, I find it hard to believe that Kawaski’s had anything to do with having a seizure. Regardless, the loss is so painful.
January 4th, 2009 at 2:25 pm
my son who is now 6 had kawasaki when he was 6 months old. he was treated with the gamoglobin iv and a week later relapsed. he was treated again with gamoglobin iv and is in great health now; taking a baby aspirin once a day. in the beginning we were told we had to restrict his physical activity, but he’s doing fine now. we visit the cardiologist about once a year. my heart goes out to baylee and his parents as well as the travolta’s.
January 4th, 2009 at 6:46 pm
Thea–It didn’t say “some studies”. One of the leading KD physicians in the country is at UCSD and has been trying to find answers about this disease for years. Also, Wikipedia is NOT a reference! Anyone can put or edit whatever they want. If you want more information, look for reputable websites. Read the research. Physicians are examining genetic links.
January 5th, 2009 at 1:44 am
My Son was diagnosed with this disease at 8 months old, and it was only due to our persistance with taking him to the hospital each day that made the doctors believe that we were not just making this up! Ha had all the typical indicators for Kawasaki disease, but was into day 11 when he finally was admitted to hospital and had the gamaglobin iv, thankfully no damage was done to his heart though we too have the yearly checks, but he does have arthritis as his joints were affected by the disease…At 3 he is still affected by this… For us we dont know if and/or when the affects will dissipate as still so much is unknown about this disease.
January 5th, 2009 at 8:37 am
I think the most important point here is that these parents listened to their child about his symptoms (his heart murmurs) and then worked as his advocate in getting the most out of their health care. Children describe and exhibit symptoms in their own way, so parents and health care workers have to take the time and make the effort to hear, and see, what the children mean.
January 5th, 2009 at 10:01 am
I am 100% behind what she says follow your instincts. I always do that with my daughter. She’s right doctors do not know everything. Their degree doesn’t give them full knowledge of everything in the medical field. And listen to your child, it is their body after all.
January 7th, 2009 at 1:08 am
My son was diagnosed with KD Dec ‘04 at 9 months old. We are very very lucky to be in San Diego (his Dr is the UCSD Dr linked above!)and have walked into children’s hospital and have them recognize it immediately. Yes, it does run it’s course, but gone untreated, or treated late, leads to heart problems.
I know the Dr’s were “discouraged” with the Travolta’s public misinformation distribution re: the carpet cleaning products. As a celebrity you have the opportunity to promote awareness, and they didn’t. (this does not mean that they don’t get my deepest sympathy for the loss of a child.. every parent’s worst nightmare!)
But I am thrilled that the Littrell’s are publicly speaking about their situation. KD’s biggest issue is misdiagnosis, and the more information that parents have about the disease, the better chance they have for their children to be treated.
I’m happy to say, my son is now almost 5 and 100% healthy..
January 8th, 2009 at 3:40 am
It makes me sad that it took that many doctors’ visits to get a real diagnosis. My three-year-old cousin was ill and her mother immediately took her to the same family pediatrician that both my sister and I always went to as kids. The doctor said it was the flu and sent them home. The next day my cousin was much worse and was rushed back to the ER. Turned out to be meningitis, but it was too late. She fell into a coma and died.
That pediatrician stopped practicing after that, as she probably should have. It seems doctors are not giving the time and proper care to patients these days. It seems that too many go into the profession for the money now. Which is very, very sad. I know that there are also many doctors who are also overworked with too many patients to see. Even getting myself into see some of my doctors seems to take a month! Healthcare in America is now soulless and outrageously expensive.
Little Baylee is lucky to be correctly diagnosed and on the road to recovery. He’s also lucky to have parents with the resources to be able to keep taking him to doctors when they felt his diagnosis was incorrect!