Blue Baby

Updated on June 14, 2008
H.W. asks from Hiram, GA
15 answers

I have an 11 month old daughter who has recently (over the last several weeks) begun turning blue (feet, hands, lips). She was considered "failure to thrive" at two months old when she weighed in at eight pounds. Although she did well with nursing, (good latch, good milk supply) it concerned the lactation consultant because she was taking in so little when feeding (less than 2 ounces after 30+ minutes of nursing @ 2 months old) and was losing weight. She also noticed something "off" about the way she nursed and took a bottle (lapping at the nipple of the bottle with her tongue rather than sucking--she could not form a good seal around the nipple). After a week at Scottish Rite and an evaluation by the speech pathologist (who trained us to feed her with a special "mouth squeeze" so that she could suck), they determined that she was "aspirating on her feedings" and had a problem with her suck/swallow due to "limited palate movement". They never could really determine why it wasn't moving properly. Since that time, she has been seeing a pediatric plastic surgeon who is "not entirely convinced" that she does not have "a submucous cleft palate" which basically means that he's not sure either way. I know others who have had babies diagnosed with a cleft palate well after the age of one, so I understand that it can be difficult to diagnose at times. She has seen a chiropractor, and with his help has thrived and is now above average in height and weight. We no longer have to offer cheek & jaw support to help her feed. Although she is so much better, it has always been in the back of my mind that something wasn't quite right, and after she developed what we call the "Smurf Syndrome", the pediatrician has recommended that she see a pediatric cardiologist her appt. is Wednesday) to rule out any heart problem that might be causing her oxygen level to drop (it measured slightly low in his office and on a previous sleep study done at the hospital). He has also recommended that I speak to her specialist about any additional concerns he may have (I am waiting to hear back from his office). Although she is not blue all of the time, it does happen at least once to several times a day, and any "blueness" to your baby is always a little alarming! I just wondered if anyone out there has had any experience with the "Smurf Syndrome" or with a cleft palate. She seems totally happy and healthy otherwise, and I just don't want to miss something that might be going on. Thanks for all your help! :)

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So What Happened?

First I'd like to say how much I appreciate all the kind words, prayers, and helpful advice I've received over the last week. Brooklyn's cardiologist appt was yesterday, and (thankfully) they do not feel that her problem is cardiac related. Although she does have a small hole in her heart (one they say should close itself over time--lots of babies have them but they are never detected), it isn't interfering with her oxygen flow. He is going to recheck it in a few months to make sure it DOES close on it's own, but he isn't concerned. He was more concerned with the results of her previous sleep study (which was in December and revealed 53 "obstructive" episodes). He (along with the craniofacial specialist) want her sleep study repeated--her "obstructive episodes" aren't brain related (which they were happy about), but something IS interfering with her taking in oxygen (more prevalent blue coloring when she is congested/teething). They mentioned tonsils and adenoids, but want to do a thorough exam to make sure. They say that her small chin may also play a role. Since her teeth have come on in and she hasn't had any mucous in her nose and mouth, she has had no further blue episodes. So all in all, everything looks good from the cardiac side, but they want to keep exploring the submucous cleft palate angle as well as anything else that may be blocking that air flow. I am waiting on a call from the sleep study department, and after they go over the completed study, they will proceed from there (follow up with specialist as well as possibly with an ENT). Even if it is tonsils or adenoids, they say she will probably "grow into them" if they are large and not have to have surgery. The specialist said that the blue coloring is nothing to dismiss, and they seem determined to discover what is going on. I am thankful that they are taking my concerns seriously and are continuing to search for answers. I will let you know the results of the sleep study, which should be scheduled within the next week or so. Thanks so much for everything! :)

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L.H.

answers from Atlanta on

H... I understand your predicament. My son, now 27 was born with a severe heart defect and had all of the symptoms your child exhibits. The greatest gift we received was a diagnosis, treatment and support that a wonderful cardiologist and hospital system offer. For your sanity and her health, have it checked out. It is scary but early intervention is KEY. If I may help you in ANY way, please contact me privately. We are acquainted with an EXCELLENT pediatric cardiac facility if you are in need. I was also privileged to work with over 400 families whose kiddos had defects. You are in my prayers...L.

1 mom found this helpful
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K.R.

answers from Savannah on

Hi H.,
I have no experience with either but I have had 2 very sick babies and the only hospital out of ALLLLLL of the many we were sent to because no one seemed to know why my son stopped breathing for no reason until 6 months was Egleston Childrens Hospital in Atlanta. They literally told me "he will not leave until we figure out what is going on".
Just a thought. You can call them and see or ask her doctor to refer you there. They were so helpfull and supportive in many ways.
Goodluck!!

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K.W.

answers from Chattanooga on

I have a daughter that would turn blue when she was younger, and was always so small, she is 16yrs old now. The doctors couldn't find a reason for it. Scottish Rite said that there was nothing wrong with my child that I was an "over-reacting-attention-seeking" mother because I had taken our child to the hospital so many times, and all their test couldn't find the problem. Our pediatrician defended me and said there is something wrong somewhere and that she would find it, it took a lot of test. It turned out to be a "growth", inside the blood vessel, inside the heart. Which means that it will not show up on test, this is what she told us, unless you are looking for it. She wasn't getting enough oxygen to her body, thru her blood flow. The cardiologist said that if we had listened to the Scottish Rite doctors that our child would have died. So please keep searching for answers. God Bless you and your family!
==we only use Egleston now, it is a longer drive but the doctors never told me that I was wrong about my child. Our stay there was wonderful! Everyone there really cares about the children and their families.

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C.A.

answers from Atlanta on

As an adult cardiac nurse, i agree with the advice others have mentioned. Don't leave the cardiologist care until you have an answer - it could be something simple, but as major as a heart deformity that needs to be treated now. Best of luck.

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L.K.

answers from Spartanburg on

hi H.,
my son who is now 15 months was born with a cleft palate of the soft tissue. At 6 months old he only weighed 11lbs.
To drink an 8oz bottle took him at least an hour half. He had his palate repaired at 9 months old, and now is a completely different child. Like yours he is now above average in weight and eats and drinks like a normal child.
I would look more into the palate because as far as the eating its sounds exactly what was happening to my child.I cant say anything about turning blue never experienced that. But, if you should find out its the palate i can reccommend a GREAT surgeon. Good luck with everything.

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D.P.

answers from Atlanta on

All good advice. I have very little to add that hasn't been said already. I agree that the blueness is probably separate from the feeding problems. (Often, babies that have one problem, have more than one.) Cardiologist, pulmonologist. You need to find out why she's not getting the O2 she needs. Is the blueness around the same time as a feeding? -- could be that she's "forgetting" to breathe when she eats. Egleston is excellent and my strong referral. Mostly, be a squeaky wheel. Do your own research and ask questions. You and your husband are the ultimate advocates for your little girl.

Good luck and God bless you and your family!

http://www.nlm.nih.gov/medlineplus/ency/article/001110.htm
http://www.sciencecases.org/fetal_heart/fetal_heart.pdf
http://en.wikipedia.org/wiki/Blue_baby_syndrome

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T.A.

answers from Killeen on

I would be very concerned about her breathing, however there is a disease that turns people blue. Methemoglobinemia is a rare hereditary blood disorder that results from excess levels of methemoglobin in the blood. Methemoglobin which is blue, is a nonfunctional form of the red hemoglobin that carries oxygen. It is the color of oxygen-depleted blood seen in the blue veins just below the skin. It can be brought on by several things: abnormal hemoglobin formation, an enzyme deficiency, and taking too much of certain drugs, including vitamin K, which is essential for blood clotting and is abundant in pork liver and vegetable oil. Little is actually known about this disorder, but there was once a family of Blue People in Kentucky. They do have descendants that still have traces of the disease so it isn't gone. You can read more about it at: http://www.rootsweb.ancestry.com/~kyperry3/Blue_Fugates_T...

No matter what, make sure you stay on top of her oxygen levels. She can wear a monitor if necessary to monitor her several times a day. And don't let the doctor's give up! I will be praying for you both!

T. Ashe
Jordan Essentials Bath, Body and Spa
http://www.jordanrep.com/11155

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D.S.

answers from Augusta on

I'm a respiratory therapist in a children's hospital. I would definitely agree to see the pediatric cardiologist. This definitely sounds like something cardiac related.

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E.M.

answers from Atlanta on

H.:

Several years ago, I heard this story and searched the internet today to get information for you. Here is a story that indicates that you baby could be enzyme deficient. Talk to your doctor - I market a children's vitamin that actually has enzymes in it. Email me and I'll get the information to you. ____@____.com the rest of the story.

It seems that the Fugates of Kentucky lived for many years in relative isolation in the Appalachian Mountains and, as it turns out, several of them were indeed blue.

By reading the above page and following the links on it, we learned that the matriarch of the family, Mary Fugate, who moved to Kentucky in the 1800s, was a carrier of a rare disease that prevented her blood from carrying the usual amount of oxygen.

The disease, Methemoglobinemia, which we researched on Yahoo! Health, is genetically inherited and causes an enzyme deficiency that results in cyanosis, "a bluish color to the skin."

Over the course of time, due to the isolation of the family, several of the Fugates intermarried. This caused the normally recessive disease to occur with greater frequency. By the late 1800s, many of the Fugate clan were feeling more than a little blue.

Despite the fact that their blue appearance didn't otherwise affect their health, many of the Fugates were delighted when a doctor named Madison Cawein came calling and prescribed "methylene blue." The chemical allowed a second enzyme to do the work of the missing one and caused the Fugates to pink right up!

Today, as a result of the "increased prosperity and mobility" of the mountain folk of Kentucky, the chances of finding a blue person are slim. Still, you never know...

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R.D.

answers from Louisville on

I was wondering what the pediatric cardiologist said. My son is a blue baby as well. He was diagnosed with a heart defect before birth and everything you are describing sounds like him. You can email me at ____@____.com if there is anything you want to talk about. My son is 20 months old and needs several heart surgeries.

R.

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S.H.

answers from Atlanta on

You really need to get her evaluated by a pediatric cardiologist. Any time you notice blueness to fingers, toes ,lips etc that means there is a problem with blood supply (oxygenation) to that area. Has anyone said anything to you about possibility of a heart defect?? Just curious with some of the symptoms you say she has. Never the less please get her seen by a pediatric cardiologist as soon as possible. God Bless and hope this helps.

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B.R.

answers from Atlanta on

Dear lady get your baby to peds cardiologist YESTERDAY. Sounds as f something is indeed wrong with her heart if she is turning blue. This is not normal. The sucking issue may be another prob, but less serious than turning blue. She may have an abnormality in the structures of her heart; she needs an echo (an ultrasound of the heart), soon as poss.

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K.S.

answers from Atlanta on

H.--

If you want, you could e-mail me and I have a couple of names of GREAT specialist that we have seen for my son. He has not had "Smurf Syndrome", but we have had heart, cardio, feeding and other obstacles (I can tell you a little more in an e-mail).

____@____.com.

K.

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E.L.

answers from Atlanta on

You may want to check out the Marcus Institute, near Emory (www.marcus.org). They specialize in pediatric developemental disorders and have a really great program for kids with feeding/failure to thrive issues. Good luck!

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J.A.

answers from Savannah on

H.,
I am very surprised that your pediatrician has only just now recommended that you see a pediatric cardiologist. There are several cardiac conditions that she needs to be evaluated for. Cyanosis (as evidenced by the blue color) is an indication that she is experiencing periods where she is not getting adequate oxygenation. That this happens when she is nursing/taking bottle, is something that should be specifically pointed out to the cardiologist, along with any other symptoms.

You do not indicate where you live so hopefully you are in an area where you have access to true Pediatric Cardiologist, not just a cardiologist who sees kids.

Please keep us up to date on what you find.

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