#<- why not there's information on tetralogy of fallot

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Right Atrial Enlargement: Signs and Treatments

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Right Atrial Enlargement: Signs and Treatments

The heart is divided into four chambers that work based on very specific blood volumes and pressures. When these volumes and pressures are out of balance, a number of problems can occur.

Right atrial enlargement occurs when the right atrium—the first entry point of blood returning from circulating in the body—is larger than normal. This can increase the amount of blood and pressure of blood flow leading into the right ventricle and eventually the pulmonary artery in the lungs. Left atrial enlargement can develop too, resulting in problems with how blood is pumped out to the body.

While left atrial enlargement can cause chest pain and breathing problems, alerting you to the dangerous condition, right atrial enlargement usually develops with no symptoms at all.

Science Photo Library / Getty Images

Types

Right atrial enlargement goes by several names, including right atrial hypertrophy, overgrowth, or dilation. There are nuances among the diagnoses, but the outcome of each is the same—the right atrium of the heart is larger than normal. This means that the right atrium can hold more blood than it should until that larger volume of blood passes to the next, average-sized heart chamber.

There are several types of cardiomegaly, or heart enlargement. Enlargement can affect the entire heart or specific chambers, and you can be born with the condition or develop it from chronic conditions like high blood pressure.

How Big Is Too Big?

A normal right atrium can hold between 11 and 40 milliliters (ml) of blood at a time. In people with atrial enlargement, the atrium can hold far more. There have been rare cases in which the right atrium can hold 700 ml and even 1,900 ml.

Different types of right atrial enlargement are classified by how or when the problem develops. Idiopathic enlargement of the right atrium (IERA) is a rare condition that can exist with or without other heart problems.

Right atrial enlargement can also develop over time due to a number of other heart problems or conditions, such as high blood pressure or heart valve disorders.

Symptoms

In many cases, people with right atrial enlargement have no symptoms at all and may never even know that they have it. In fact, one study estimated that 48% of people with congenital (present at birth) or idiopathic (arising spontaneously) right atrial enlargement have no symptoms. It is usually diagnosed by accident or when a complication results.

Symptoms occur more often in people who develop complications from right atrial enlargement or whose condition arose from other cardiac problems. Possible symptoms include:

When Is Discomfort an Emergency?

If you have any of the following symptoms—especially if they come on quickly and strongly—call your doctor, 911, or visit an emergency department immediately:

Chest pain that continues after rest or medication

Shortness of breath, even at rest

Dizziness

Coughing up pink phlegm or blood

Loss of consciousness

Unresponsiveness

Causes

Some possible causes or conditions related to right atrial enlargement include:

Atrial fibrillation: An irregular heart rhythm caused by abnormal electrical impulses in the heart

Congestive heart failure: A decrease in the heart’s ability to pump blood effectively

Chronic obstructive pulmonary disease (COPD): A chronic respiratory condition that can cause strain on heart function

Pulmonary hypertension: Increased pressure in the pulmonary artery that can lead to heart failure

Pulmonary stenosis: A narrowing or restriction of the pulmonary artery

Tetralogy of Fallot: A congenital heart defect with specific abnormalities in the anatomy of the heart

Tricuspid stenosis or regurgitation: Failure or weakness in the tricuspid valve that can cause blood to leak back into the right atrium from the right ventricle

Pulmonary atresia: A congenital defect that occurs when the valve that helps blood flow from the heart to the pulmonary artery doesn’t form correctly or at all

Septal defects: Tiny holes that develop when the heart is forming

Heart valve disorders: Problems with the different valves in the heart that control the flow of blood

Why Atrial Enlargement Doesn’t Occur Alone

When atrial enlargement develops over time, it usually indicates severe heart problems. In many cases, there is a domino effect of one problem leading to another. For example, valve disorders like tricuspid regurgitation can cause pressure imbalances, resulting in conditions like pulmonary hypertension. In time, pulmonary hypertension can lead to atrial enlargement or more severe cardiomegaly and heart failure.

Diagnosis

The first step your doctor will take is to complete a physical assessment and ask you about your family and personal medical history. Your doctor will also perform a physical exam and listen to your heart and lungs. You may even have blood work done to check your overall health and wellness.

If these exams or tests raise any red flags, your doctor will move on to heart-specific testing to get more information about how well your heart is functioning. One of the tools your healthcare provider will use is an electrocardiogram (ECG or EKG). It measures the electrical signals of your heart and how well its electrical and pumping systems are working. However, it’s usually more accurate for diagnosing left atrial enlargement than right atrial enlargement.

An ECG will provide a lot of information to your doctor, but even if a problem is detected on the ECG, there are many things that could be to blame. If your healthcare provider suspects you have right atrial enlargement or is trying to diagnose other heart conditions, a number of tests may be ordered, including:

With some imaging tests, your doctor can see blood flowing in real time through the chambers of your heart. Pressures and sizes can also be measured.

Your doctor may also perform noncardiac tests like an X-ray to rule out other conditions that could be causing problems in the heart, such as respiratory diseases.

Why Atrial Enlargement Develops in Athletes

Atrial enlargement can develop in athletes as a result of intense endurance exercises. Heavy exercise can cause cardiac remodeling, which is a group of changes in heart tissue due to the increase in blood volume that occurs during activity. Long periods of increased volume can cause enlargement of the heart—mostly in the left atrium, but it can also happen in the right atrium.

Treatment

There is no real consensus on the best treatment for right atrial enlargement. Surgery may be done in severe cases, or even early on to prevent further problems from developing.

Surgical options may include open-heart surgery for resection (removing excess tissue) or ablation. Ablation is a procedure that scars heart tissue. It is often used to correct abnormal heart signals that can cause acute or even fatal events like stroke or heart attack.

Other, more conservative treatment options include:

Watchful waiting, or using regular follow-up visits to monitor the progression of your condition

Taking medications like beta-blockers to improve the pumping function of the heart

Taking anticoagulants to reduce the risk of clot formation in the atrium due to inadequate pumping

Using implanted devices like pacemakers or defibrillators to control abnormal rhythms

Taking medications to control your blood pressure or heart rate

How Long Does It Take to Recover from Open-Heart Surgery?

Open-heart surgery is major surgery. Even with less-invasive cardiac surgeries, you should prepare for a significant recovery and rehabilitation period. If you have open-heart surgery, you will spend time in an intensive-care unit with various drains and even a breathing tube for the immediate recovery period. Expect to spend up to two weeks in the hospital, followed by outpatient cardiac rehabilitation.

Complications

A number of serious complications can occur with right atrial enlargement. Since about half of all known cases of right atrial enlargement have no symptoms, the condition can get worse over time without anyone knowing. Eventually, it can lead to more severe problems, such as:

Frequently Asked Questions 

What causes enlargement of the heart’s right atrium?

An enlarged right atrium can be caused by a birth defect, an anatomical problem in the heart, or chronic health problems like high blood pressure.

Can an enlarged right atrium be fatal?

Yes. An enlarged heart can become ineffective at pumping blood to where it needs to go or have disturbances in its normal electrical impulses. Both of these can result in a change in heart rhythm or heart failure, and even death.

Can you reverse an enlarged right atrium? 

No. You cannot reverse an enlarged right atrium, but you may be able to treat the root cause if the enlargement is caused by something like high blood pressure or a bad valve. Surgery is an option for treatment, but your doctor may also choose to monitor you and treat your symptoms with medications.

Summary

Right atrial enlargement happens when the right atrium fills up with more blood than normal. It doesn’t come with any symptoms, so by the time you realize something is wrong, it may have progressed and caused other complications already. However, there are many treatment options like medications and surgery that can help you manage this condition.

A Word From Verywell

An enlarged right atrium is a heart condition that can be dangerous in a different kind of way. It develops in many cases with no symptoms at all. It is often diagnosed while other problems are being investigated.

If you do experience symptoms, these can include extreme fatigue, chest pain, and shortness of breath. Visit a healthcare provider immediately. You could have atrial enlargement or a number of heart conditions that could cause serious health problems.

For some people, right atrial enlargement has no symptoms and never really impacts their health. If it does, your healthcare provider will be able to help you manage your condition with medications, therapies, or even surgery.

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[ihearticie]

Tuesday, December 20, 2016

The fetal echocardiogram was scheduled for 10 am. I couldn’t help but judge the other pregnant women in the waiting room that already had healthy children with them. I was not happy. I was trying to disconnect myself from the situation I was in. I wanted to not feel. Once in the sonogram room it was the same ol’ song and dance. The tech was really nice but I wanted no parts of conversation at that point. I just wanted to get it over with and get answers. I had the entire weekend to think about what horrible things could be going on with our baby’s heart and could care less about small talk. The tech told Carl and I that the pediatric cardiologist was following along remotely in the other room as the fetal echo was taking place. The sonogram was all based around our daughter Icie’s heart. I did get see her little self moving around from time to time on the screen and it just made me want to cry. Once done we were moved to the pediatric cardiologists room. She wasted no time telling us what she saw and what was going on with Icie. Carl and I were told that Icie had Tetralogy of Fallot. The doctor had a printout of a heart and showed us what she meant. It is a heart defect that has four problems. 1. A hole in the lower chambers of the heart 2. Pulmonary valve is to narrow 3. The aorta lies right over the hole in the lower chambers 4. The muscle surrounding the lower right chamber becomes overly thick. I sat there wide eyed and just listened to what she was telling us. She told us to let her know if she was going to fast because she understood it was a lot to take in. I’m pretty sure I told her that I had no idea what that diagnosis meant, like in real world situations. I understood the physical issue of the heart but what does that mean for our baby? She went down the list of what it means. Once born, Icie would be taken from me, wiped down and would have her O2 levels monitored. The cardiologist told me that mothers of babies with TOF usually don’t get to be close and hold their baby after birth. ( This was another instance that I felt my first time mother experience was being taken from me.) If her O2 levels dip below 85 Icie would get transported to Children’s Hospital. Once there she would have open heart surgery to patch the hole in her heart and to slit the pulmonary valve then stitch a piece of gore tex material over the valve to make it wider. She would stay at Children’s Hospital for ????? amount of time till she improved. During this time I’m expected to stay in the hospital for 3 days after giving birth while Carl runs to Children’s Hospital to be with Icie. Good luck with keeping me there! Unless I am physically unable to walk for some time I plan on leaving against all medical advice. I totally trust Carl to be there watching over our daughter alone that isn’t what this is about. There is no way I see myself trying to take naps and relax while my first child is having open heart surgery in a different part of town. Hell to the Fucking no! Stitch my ass up, give me some Tylenol and too-da-loo.✌I’ve told my midwives and doula about that plan and they all say they understand and I shouldn’t be forced to stay away from Icie. Now after birth if Icie’s O2 levels were 85 and up she would be able to go home with us but only stay at home for 4 -6 months. That time is basically “ Fatten her up and make her as big as possible” time so that open heart surgery can occur while she is bigger. Babies with TOF have a hard time eating because they become tired easily. If she has issues staying awake to eat it would be difficult for her to gain weight. Icie would have to be fed more often than normal babies to try to get the nutrients she need. I was told that formula may be incorporated into the breast milk supply for greater nutrient density. She could also have a hard time swallowing which could make feeding more difficult. Another issue we would be dealing with if she did get to come home is she could possibly be deprived of adequate oxygen or cyanotic, and could have “tet fits.” Tet fit meaning Tetralogy fit. When those occur Icie would turn blue and could possibly not catch her breath. Babies with this congenital heart defect do typically have a blue tint to their lips, skin, and fingernails. That being said, Icie could turn even more blue than normal. Things that could set it off would be if she got startled, if she was crying, if she got to excited, basically anything that made her heart beat faster than normal. Once in a tet fit we would need to try to calm her down and put her knees to her chest to help with O2 flow. If that didn’t help we would be calling 911. It’s a lot of information, and I am sure that I didn’t catch everything that was told to me that day. Carl and I will learn more as we go. What we do know is surgery will happen, either right after birth, or after 4-6 months to correct the issues. Then surgery will need to happen again, usually not to long after the first surgery, to put a flexible piece of material in the pulmonary valve. Icie will have to see a cardiologist for the rest of her life to check up on the valve and hole in her heart. She will need to have the valve replaced, how often we really won’t know till it’s happening. Some kids need it every 7 years, some 10 years some 20 some 30, it’s all case by case. After hearing all the ins and outs of the heart defect we were told that if TOF is evident usually DiGeorge Syndrome is too, since DiGeorge is known to cause this type of defect. Digeorge syndrome can be a mutation that occurs randomly or passed down from parents who have it. My husband and I will be tested to see if we have DiGeorge but we are both pretty sure we do not. The only way to tell if Icie had DiGeorge Syndrome was by doing a procedure called amniocentesis. By getting samples of the amniotic fluid that Icie has been shedding chromosomes into we can tell what if any chromosomal issues she has. Terminating the pregnancy was brought up also. I was 20 weeks at the time. I honestly don’t know how it was brought up, I may have asked, it may have just been in the list of things to discuss with patients but I am happy she brought that to the table as well. I like to know all of my options. The pediatric cardiologist had us meet with a woman to help us schedule another set of appointments. The woman in the next room made our next fetal echo appointment. Since we know there is an issue we have to have sonograms of Icie’s heart every 4 weeks to monitor it. The scheduling lady brought up risks of having amniocentesis done but my husband and I agreed that we wanted to go ahead and have it done. She left the room to go try to find the doctor who would be doing the procedure to see if we could be seen that day. Her room was small and she has Christmas music playing. If you know me you know my feelings on Christmas music. I hate it. Sitting in that room with the news we just received, knowing a procedure was about to be done to see if there were even more problems with our daughter, while Christmas music was playing made me sick. I remember thinking “ now I really hate the fucking song” to what was on. Thank god I don’t remember what it was. Here it is, days before Christmas and people all over the place are celebration, playing Christmas music, being all happy and me and Carl are in a small room feeling like our lives are falling apart. I was becoming really angry. I contemplated turning her music off and just being like “really??” when she came back in to a silent room. Does anyone actually think sad ass depressing Christmas music is great background noise for a family who just received horrible news? I HATE CHRISTMAS MUSIC! Anywhoo! She came back in and said they wanted to have the amniocentesis done that day. They really were trying to get us as much information as possible before the deadline for pregnancy termination. It really scared me that they were jamming me in for these tests. I was thinking" is something seriously wrong with our baby to be working this hard to be in termination time constraints?" We were scheduled and off we went to the genetic counselors waiting room once again. Once there, google fest 2016 occurred. DiGeorge wtf is it? What are symptoms? What does it do why, how , all of it. What stood out to me was the possibility of cleft palate, learning disabilities, schizophrenia once an adult, breathing problems, and some with it develop autoimmune disorders. It was all scary to read. Once in the genetic counselors office we went over the risks again of the amniocentesis, signed some papers and off to a waiting room again to wait for the procedure. Carl and I had blood drawn while we waited. If any abnormalities were found in Icie’s results they could possibly be explained by looking at our blood. It was probably an hour of waiting when we were called into the procedure room. The procedure was straight forward. An ultrasound guided needle was poked through my abdomen then through the uterus and into a space away from the baby that had a good pocket of amniotic fluid. Then 2 tablespoons of fluid were taken to be tested. It didn’t hurt much. Me stubbing my toe would feel like pure hell level 14 pain compared to what it felt like, which was like a 2-3 on the pain scale. I did get light headed once it was done. I thought for a second I was gonna pass out but I just kept breathing and the feeling dissipated. We were told 10- 14 days for results but some could come as early as 3 days. So off we were. Mentally drained, angry, crampy, shocked, terribly heart broken, back into life outside the hospital. I cried more that day than any day so far. I would go upstairs to the bathroom to cry because even though Carl is no stranger to me crying ( I’m a Cancer OK…I’m emotional and I cry lol) I didn’t want to make a stressful situation even worse by breaking down right in front of him every 15 min. I could hear him crying quietly downstairs and it just made me cry harder. It killed me knowing he was upset. I’m fine dealing with my own self but having my husband be upset and hurting and me not being able to do something about it was a feeling that just crushed me. We were going through it together. Something new, horrifying, heartbreaking and so out of our control. Something so exciting became so upsetting within a few days. I could feel Icie moving around inside of me. So I just sat on the bathroom floor holding my belly letting her know how much I loved her while I cried. All we could do at that point was wait for the test results.

#tetralogyoffallot #tof #congenitalheartdefect #chd #heartmom #heartwarrior #firsttimemom #daughter

[healthcareour]

Blue Baby Syndrome- Causes, Symptoms, And Treatments

Medical Counsel Blue Baby Syndrome- Causes, Symptoms, And Treatments

Blue baby syndrome or infant methemoglobinemia is a congenital condition in babies. The condition is characterized mainly by the blue skin of the affected, as the name indicates. Though it is a congenital condition in most cases, some may develop it after birth. A significant decrease in the level of haemoglobin in the baby’s blood is the main cause of blue baby syndrome. The blood protein called haemoglobin carries oxygen around the body and supplies to the tissues and cells in the human body.

Blue Baby Syndrome- Causes, Symptoms, And Treatments

A decrease in the haemoglobin level results in insufficient oxygen flow around the body. Eventually, the baby’s skin colour turns blue. The condition is seen mostly in rural areas among poverty-affected societies. It is not common in industrialised countries. Some congenital heart defects, genetic factors, and other environmental factors can also contribute to the development of this condition.

Causes

Poorly oxygenated blood stands out to be the prime cause of why the baby turns blue. Problems with the heart, blood, and lungs, can cause the skin to discolor. There can be several reasons behind the lack of oxygenation. Let's look at the possible causes of the blue baby syndrome in infants.

Methemoglobinemia

Infants have very sensitive and tiny gastrointestinal tracts. These underdeveloped tracts convert nitrate into nitrite. Methemoglobin production is a result of nitrite circulation in the body. Though methemoglobin is oxygen-rich, it doesn’t release oxygen. The root of this condition is nitrate poisoning. If the baby consumes water contaminated with nitrates, it can affect the blood flow. Many cases of methemoglobinemia are the result of nitrate-contained water. Feeding the baby with well water mixed infant formula or other homemade baby food that contains nitrate can also result in the condition. Methemoglobinemia is mostly seen in babies under the age of 6 months. It can even occur as a congenital condition in rare cases.

Tetralogy of Fallot (TOF)

It is a rare congenital heart defect in babies and is the primary cause of the blue baby syndrome. Tetralogy of Fallot is a complex condition, where a combination of four structural abnormalities in the heart develops together. It can be a hole between the right and left ventricle, a blocked valve between the pulmonary arteries and the right ventricle, thickening of the right ventricular valve, or a displaced aorta. The condition finally results in reduced blood flow and poor oxygen flow throughout the body.

Other congenital heart defects

Most of the congenital heart diseases are the result of genetics. There are chances that babies born with Down Syndrome can also have heart problems. Poorly managed type2 diabetes during pregnancy can also result in congenital heart defects. Cyanosis causes only a few congenital heart defects.

Symptoms

Babies born with the condition will have a blue discolouration of the skin around hands, feet, and mouth. Discolouration of these areas is known as Cyanosis, which is a sign that suggests that the baby is not getting enough oxygen. Other symptoms associated with blue baby syndrome are:

Seizures         

Diarrhea

Difficulty breathing

Loss of consciousness

Vomiting

Increased salivation

 Lethargy

Rapid heartbeat

Clubbed fingers and toes   

Diagnosis

The doctor will identify symptoms of blue baby syndrome during the regular checkup. If the parent or caregiver notices the bluish discolouration in the baby, they should immediately visit the doctor for a detailed consultation. The diagnosis will begin with tracking of medical history. To understand the medical history, a doctor may ask about the symptoms in the baby, conditions at home, feeding patterns, and medical history of the family. While performing the physical exam, the doctor may examine the discoloured area and listen to the heart and lungs of the baby. Apart from the physical examination, the doctor may also suggest additional tests to diagnose the condition. The doctor may suggest the following tests:

Chest x-rays for a detailed view of the lungs and heart

Blood tests

Echocardiogram to see how well the heart functions

To understand the oxygen level in the blood, the doctor may advise oxygen saturation

If the doctor needs to look at the blood vessels and other structures inside the heart directly, he shall also suggest cardiac catheterization

To understand the underlying cause, it is good to get the tap water tested for nitrate levels. If the nitrate level is below 10miligrams per liter (mg/L), the water is safe. Do not feed it an infant if the nitrate level is above 10mg/L.

Treatments

The doctor shall decide the treatment procedure based on the cause that turned the baby to blue. Surgery is the primary mode of treatment if the underlying cause is any abnormality. The doctor will correct abnormalities like congenital heart disease through surgery. Surgery should be done before the baby turns 1-year old as the condition can get worse with age. The ideal age of surgery is around 6-months or a little earlier. The baby will get more oxygen, and the discoloration will fade once the surgery is successful. 

If the cause is high nitrate levels in the water, you may need to get help from a toxicologist or a poison control center to treat the condition. It is important to avoid the sources of nitrate contamination, like using well water, for the health of the baby. If the baby develops any further health issues in connection with the blue baby syndrome, the doctor may suggest a combination of other treatments as well. Methylene blue is a medication given in the form of an injection to babies with severe forms of the syndrome. 

The doctor may suggest correcting surgery if the condition is caused by the tetralogy of Fallot. In this case, the intra-cardiac corrective repair is the main solution. The procedure involves closing the ventricular septal defect with a synthetic Dacron patch. It can correct the blood flow properly from the left ventricle to aorta. The procedure also helps in repairing the pulmonary arteries. The narrowed arteries broaden and improve the blood flow to the lungs after the procedure is successfully carried out. In emergency cases with premature babies with underdeveloped pulmonary arteries, the doctor may carry out a temporary procedure. In the procedure, the doctor creates a shunt between the pulmonary artery and a branch of the aorta. This is a temporary procedure that will be reconstructed following a corrective procedure.

Outlook

The blue baby syndrome is a rare disorder and can be caused due to many causes. Sometimes, the doctor may advise no immediate treatment too. As performing surgery in newborns can be risky, the doctor may suggest any other treatment alternative. A baby with the blue baby syndrome can lead a normal life after successful treatment. It might hardly have a few health consequences. 

Prevention

Babies bring heaven to every family. The bundle of joy is a dream to many. From the beginning of conceiving, the family starts to prepare for the welcoming. Baby’s health is considered of utmost importance than anything. When you prepare to welcome the new member to the family, always keep their health in mind. There can be some flukes of nature that cannot be prevented. However, many of the other causes can be avoided. Here are a few steps to take to prevent blue baby syndrome to an extent:

Avoid using well water: Well water is a good choice for the elderly, but not the little ones. Avoid using well water to prepare baby formula or other baby drinks until the baby turns over 12 months. Many think that boiling well water solves all the problems. But, boiling cannot remove the nitrates in the water. It is highly recommended to check your well water for nitrate levels. If the nitrate levels in well water exceed 10mg/L, it can be unhealthy and poisonous for the baby. You can get the right direction about checking the well water from your local health department.

Put a break on nitrate-rich foods: Try to exclude nitrate-rich food from your baby’s menu. Some of them are broccoli, beets, and carrots. You can limit feeding these foods until the baby turns at least 7-months of age. If you cannot avoid these vegetables from your baby’s food, try using frozen ones rather than fresh ones.

Avoid smoking, alcohol, and drugs during pregnancy: Alcohol, drugs, and smoking during pregnancy can also contribute to congenital heart defects in the little one. Avoiding them can prevent serious health complications.  

Medication during pregnancy: If the expectant has other health issues, and under any medical treatment, let the Gynaecologist know the details. Diabetes can be a serious health issue to consider for a pregnant woman. It should be well-controlled under a doctor’s supervision. Do not use illegal medicines during pregnancy.

The blue baby syndrome is a rare condition that can be caused by nitrate-contaminated water. Though it is rare, it can be successfully treated. Avoid giving well water to babies until they turn 1-year old. Proper medical attention and monitoring can prevent any further complications from the blue baby syndrome. But, it can also turn out life-threatening if left untreated.

Industrial and agricultural revolutions have backed the country in economic enhancement. But the consequences like waste and fertilizers have polluted the land. It is one of the main reasons for high nitrite concentration on land and water. The underlying cost to industrialisation might be the health of our next generation. Rare conditions like blue baby syndrome are on the rise, as the studies suggest.      

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Blue Baby Syndrome- Causes, Symptoms, And Treatments Dr. Patrick Ryan

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[eathealthylivefree]

What is CHD?

  February is not only a time to celebrate love and Valentine’s Day with hearts, it is a time to raise awareness of Congenital Heart Defects and Diseases. Two years ago, I would have let February pass by like any other month, with the exception of flowers and candy from my husband. However, everything changed in the summer of 2018 when I was pregnant with our son. The day we heard our doctor say what no parent ever should have to hear, “We can’t see a clear picture of his heart”. After weeks of tests and ultrasounds, he was diagnosed with a congenital heart defect (CHD) – structural deformities that are present at birth and can be “fixed” or “repaired” after birth.  There are also congenital heart diseases which also have abnormalities within the heart but have lifelong impacts; and are often more severe in nature

Once we started researching with our doctor, we learned how common CHDs were in infants. It is the most common birth defect occurring in almost 1% of births. More than 40,000 infants are born each year in the United States with a CHD.

There are many types of CHDs that range in severity. The CDC website lists information for some of the more common ones. Our son has Tetralogy of Fallot, which is one of the most common, and easiest to repair. However, it is often difficult for me to explain his diagnosis. That is why I find this website helpful.

Many of the congenital heart defects require surgery; over 25% of children will need it. Some of the defects even require it before the age of 1 year old, and/or involve multiple surgeries. Our son is the 1 in 110 that was born with a CHD, and required surgery at 3.5 months old. He continues to have complications post-surgery, even after a successful repair. CHD is something he will live with the rest of his life, as will we, and the thousands of others that have been diagnosed with them will live with them for the rest of their lives.

Unfortunately, there is no cure for CHD, but there are ways to bring awareness to these defects and their lifelong impact. If you would like to learn more or help support those with congenital heart defects, please visit the Pediatric Congenital Heart Association website.This is a great organization that provides support to local families, advocacy at the state and national level, and education to communities. There are also various organized CHD awareness walks, fundraisers, and other events throughout the year.

Another way to show care is by volunteering or giving to the closest Ronald McDonald House, many children and families with CHDs spend several months over their lifetime in the hospital. If you have friends or family that are, pregnant or planning to try to conceive encourage them to get all of their prenatal care.

  Sources:

Centers for Disease Control and Prevention. (2019, November 12). Specific Congenital Heart Defects. Retrieved from Centers for Disease Control and Prevention: https://www.cdc.gov/ncbddd/heartdefects/specificdefects.html

Mended Hearts. (2020). Retrieved from Mended Hearts: https://mendedhearts.org/

Pediatric Congenital Heart Association. (2020). We are Conquering CHD. Retrieved from Pediatric Congenital Heart Association: https://www.conqueringchd.org/

Written by: Bridget Britton MSW, LSW Family and Consumer Sciences Educator, OSU Extension, Carroll County

Reviewed by: Emilee Drerup  MPH, CHES Family and Consumer Sciences Educator, OSU Extension, Hancock County

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[mrlongkgraves]

After a second chance, Lincoln is growing by leaps and bounds

Lincoln and friends

“You’re the best mom ever,” is music to any mother’s ears. But when 6-year-old Lincoln spoke these words to his mom, Amber, for the first time just a few weeks ago, she totally lost it — in a good way.

“I never thought he’d be able to say that,” Amber says. “Thanks to his team at Boston Children’s Hospital, he’s come so far in just a few years.”

From hospice to hope

Lincoln was born in May of 2012 with a number of heart defects, including tetralogy of Fallot with pulmonary atresia, major aortopulmonary arteries, a hypoplastic left ventricle and parachute mitral valve. He spent his first few years fighting for his life, and at one point, his doctors in Michigan told Amber and her husband, Ed, that they thought it was time to let Lincoln go. But after Lincoln was discharged to hospice care and was holding his own after a year with no medical follow-up, they decided to get a second opinion.

“Despite all the doctors’ predictions, he was still alive and breathing,” says Amber. “I didn’t want to give up on him.” She read online about another family who had traveled to Boston Children’s for heart care, and decided to reach out. That’s how she found Dr. Puja Banka.

“Dr. Banka has been our guiding light through the whole process,” says Amber. “We’ve made seven trips to Boston in the past four years, and he’s had two surgeries there. Not only were they able to repair his heart, but he’s also grown by leaps and bounds after each surgery.”

After surgery, a shift to developmental needs

Once Lincoln’s medical needs were under control, Dr. Banka suggested working with the Cardiac Neurodevelopmental Program (CNP) to help him with his language and motor skills.

“Dr. Sam confirmed that Lincoln’s body had been working so hard just to survive that he didn’t have a chance to work on those normal kid milestones.”

“He was developmentally delayed, but we didn’t know if it was due to a stroke he had when he was 2 months old or if it was just from everything else he had been through,” says Amber. “I wanted someone in Boston to see what was going on.”

During a visit to Boston, they met with psychologist Dr. Samantha Butler of the CNP.  “Dr. Sam confirmed that his body had been working so hard just to survive that he didn’t have a chance to work on those normal kid milestones.” Dr. Butler helped the family understand Lincoln’s strengths and weaknesses and how to support him in making developmental progress, including which therapies would be helpful.

After taking an extra year in preschool, Lincoln started kindergarten this year, another huge milestone. “We never thought he’d make it this far,” says Amber. “He’s in a collaborative room where he gets one-on-one care when he needs it. He loves it and is just so happy.”

‘Hearts in the Classroom’

At the beginning of the school year, Dr. Catherine Ullman Shade, director of education for the CNP had a virtual conference with Lincoln’s entire team at school through a program she runs called “Hearts in the Classroom.”

“I saw the flyer during our last trip to Boston and thought how great it would be for his school to get information about his developmental path from the institution that saved him,” says Amber. The meeting was held in a meeting room at the school where Lincoln’s whole team could watch Dr. Ullman Shade’s presentation.

Amber says the presentation was helpful for her as well as his teachers and school team.

Lincoln with his sister, Avarielle, and brother, Ryker

“I learned some things I didn’t know, like these kids have slower processing skills, which explained why Lincoln is sometimes slow to catch on to things at home.” She says that his teacher was able to take something from each section Dr. Ullman Shade discussed to work on with Lincoln in class. And he’s already made progress. Amber says he’s really started to understand letters and his speech has exploded over the past few months.

Singing, cooking and running bases

Outside of school Lincoln is also gaining confidence. This past year, he enrolled in his first season of Miracle League baseball and loved running the bases. He also loves helping his dad cook and listening to music. Now that he’s verbal, he loves singing along, too. His favorite song? “My House” by Flo Rida. “The first time we heard him singing that song, we were just blown away.”

Learn more about the Cardiac Neurodevelopmental Program.

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