Born With Half A Skull Nj Baby Was Expected To Die It Is Now 7 Months Since His Extraordinary Surgery
Much of his brain had not formed properly. Yet today baby Lucas is still alive, cherished by his family.
The doctors and nurses spoke the blunt words more times than Maria and Augusto Santa Maria can remember:
Your baby is going to die.
They told the New Jersey couple it might happen during pregnancy, or it might happen a few hours after birth. Within a day, tops.
The baby was born at 35 weeks with no skull above his eyebrows and ears, roughly the area where a baseball cap would rest. Much of his brain had not formed properly.
Yet seven months later, after a highly unusual surgery at Hackensack University Medical Center, baby Lucas is still alive. He eats and sleeps like a champ, and he holds his head up during tummy time.
He is lethargic when awake, and almost certain to have developmental issues. There is no telling whether he will learn to walk and talk.
But all the family wanted was the chance to hold Lucas at home in their apartment, in Garfield, N.J., even for a day and now that seems practically routine. The Santa Marias are thinking ahead to next year, when doctors may fashion a bone graft to replace the missing portion of the boys skull.
We really dont know what to expect,” said Tim Vogel, the surgeon who operated on Lucas three days after he was born in March. Were in uncharted territory with him.
Key Points About Anencephaly In Children
- Anencephaly is a condition that is present at birth . It affects the brain and skull bones. The brain is not fully formed. There is also no bone on the back of the head. Bones may also be missing on the front and sides of the head.
- Anencephaly most often leads to death in days or weeks.
- Anencephaly is a type of neural tube defect. Neural tube defects are caused by a genes passed on from both parents and by environmental factors.
- You may need tests while you are pregnant to check for anencephaly in your growing baby.
- If you have had a child with a neural tube defect, your healthcare provider may recommend taking a larger amount of folic acid before your next pregnancy.
- Your healthcare provider may also advise genetic counseling. You can discuss with a counselor the risk for a neural tube defect in a future pregnancy.
Development Of The Fetal Cns
The central nervous system of a growing fetus starts with a simple structure called the neural groove that folds in to form the neural tube. This then develops into the spinal cord and brain. By day 28 after conception, the neural tube should be closed and fused. If it doesnt close, the result is a neural tube defect.
In many cases, these defects can be diagnosed during pregnancy with ultrasound scans and, rarely, with other tests such as amniocentesis .
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How Can I Help Prevent Anencephaly In My Child
The neural tube closes 28 to 32 days after a baby is conceived. This is before many women are aware that they are pregnant. Normal brain and spinal cord development may be affected during these first 3 to 8 weeks of pregnancy by:
- Not enough vitamins such as folic acid and other nutrients
- Using prescription medicine or alcohol
- Being around hazardous chemicals and other substances
- Genetic problems
Researchers have found that a woman who gets enough folic acid can help lower the risk for neural tube defects. Folic acid is found in some leafy green vegetables, nuts, beans, citrus fruits, and fortified breakfast cereals. It is recommended that all women of childbearing age take a multivitamin that has folic acid. Folic acid is in prenatal vitamins. Getting this vitamin before a woman knows she is pregnant and early in pregnancy is most important.
If you have had a child with a neural tube defect, your healthcare provider may recommend taking a larger amount of folic acid before your next pregnancy. Your provider may tell you to take this extra amount for 1 to 2 months before conception and then through the first trimester.
Your healthcare provider may also advise genetic counseling. You can discuss with a counselor the risk for a neural tube defect in a future pregnancy. Also talk with your provider about getting a prescription for folic acid to lower the risk for another open neural tube defect.
Mom Decides To Carry Baby Without A Brain For Amazing Reason
Father and husband Royce Young shared a photo of his pregnant wife, Keri, on Facebook. What he wrote beneath the picture is beautiful, but also ever so heartbreaking. The couple experienced the worst moment of their lives when they learned the baby girl inside Keris belly will be born without a brain. She wont live long after birth. But Keri bravely chose to carry on with the pregnancy for the most incredible reason!
Royce was on his way out the door, leaving for a trip, when the sight of his pregnant wife, asleep on the couch, overwhelmed him with emotion. Later, he sat in a hotel, a thousand miles away, staring at the photo he took of Keri napping. The memory of the day doctors delivered the terrible news about their unborn baby girl, Eva, flooded back. And Royce still couldnt believe his wifes amazing response.
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What Is A Sunshine Baby
The label sunshine baby symbolically represents the calm before the storm. And a sunshine baby doesnt just refer to a child born before miscarriage it can refer to a baby born before any type of child loss, including stillbirth, ectopic pregnancy, blighted ovum, early infant death, or even abortion.
How Can I Prevent Anencephaly
Although it isnt always possible to prevent anencephaly, you may be able to reduce your chance of having a child with the condition. To lower your risk, you should:
- Get plenty of folic acid: Take 400 mcg of folic acid daily, even if you dont plan to get pregnant right away. Neural tube defects occur in the first month of pregnancy, so its essential to start taking folic acid before you plan to become pregnant. If youve had a child with an NTD, talk to your provider about taking more than 400 mcg of folic acid.
- Avoid certain medications: Drugs that control seizures and treat migraines and bipolar disorder can cause NTDs. Ask your provider about medications youre taking before you become pregnant. Dont take opioids if you think you may be pregnant.
- Stay out of saunas and hot tubs: To keep your body temperature from getting too high, never go into a sauna or hot tub if you think you might be pregnant. If you have a fever while pregnant, ask your provider about taking acetaminophen to reduce your temperature.
- Manage your health: Try to lose weight before you conceive, if you carry excess weight, and maintain a healthy weight during pregnancy. If you have diabetes, talk to your provider about how to safely manage diabetes during pregnancy
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Bilingual Kids Are At An Advantage
The good news is young children all around the world can and do acquire two languages simultaneously. In fact, in many parts of the world, being bilingual is the norm rather than an exception.
It is now understood that the constant need to shift attention between languages leads to several cognitive advantages. Research has found that bilingual adults and children show animproved executive functioning of the brain that is, they are able to shift attention, switch between tasks and solve problems more easily. Bilinguals have also been found to have increased metalinguistic skills . There is evidence that being bilingual makes the learning of a third language easier. Further, the accumulating effect of dual language experience is thought to translate into protective effects against cognitive decline with aging and the onset of Alzheimers disease.
So, if you want your child to know more than one language, its best to start at an early age, before she even starts speaking her first language. It wont confuse your child, and it could even give her a boost in other forms of cognition.
How Common Is Anencephaly
Anencephaly is one of the most common types of neural tube defect, affecting about 1 in 1,000 pregnancies. However, most of these pregnancies end in miscarriage, so the prevalence of this condition in newborns is much lower. An estimated 1 in 10,000 infants in the United States is born with anencephaly.
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Grim News At 10 Weeks
Ten weeks into the pregnancy, when Maria Santa Maria got her first ultrasound, the technician at the clinic asked if it was her first. No, she said, smiling as she thought of her three energetic girls, Sophia, Mia, and Giana, whom she had delivered with no complications.
OK, so we dont have anything to worry about, the tech said.
The scan showed otherwise.
Though the fetus was little bigger than a strawberry, it was clear that the head had not formed properly.
His condition was called exencephaly, meaning the brain was located partly outside the skull. As the pregnancy progressed, the developing brain likely would deteriorate from being exposed to amniotic fluid and from tugging forces as the fetus moved inside the mothers womb.
It is part of a broader group of conditions called neural-tube defects, defined as a failure of the spinal column to close somewhere along its length. If the opening is near the bottom, the child will have spina bifida, most often meaning partial paralysis. If the opening is near the top, the result is usually anencephaly, in which most of the brain is missing. Collectively, these conditions occur in 5 out of 10,000 live births.
Exencephaly is among the rarest, said Daniel R. Dirnberger, medical director of neonatology at Nemours/Alfred I. duPont Hospital for Children. It is thought to occur in cases that ordinarily would progress to anencephaly, but the brain somehow remains protected in the womb despite an incomplete skull.
Tests To Confirm Infant Brain Damage
The majority of infant brain damage cases are diagnosed by observing symptoms and conducting tests. Computed tomography scans and magnetic resonance imaging are two tests that provide images of the brain. These tests communicate to the doctor if there is a brain injury, such as a hemorrhage or a skull fracture. In addition, an electroencephalogram may also be done. An EEG is a test that calculates the electric pathways of the brain to make sure that communications are normal and strong.
It is more difficult to assess the brain and mental health of infants and children under two years of age. An MRI and head ultrasound can be helpful in assessing brain health and any possible brain damage.
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What Are Cephalic Disorders
Cephalic disorders are congenital conditions that stem from damage to, or abnormal development of, the budding nervous system. Cephalic is a term that means “head” or “head end of the body.” Congenital means the disorder is present at, and usually before, birth. Although there are many congenital developmental disorders, this fact sheet briefly describes only cephalic conditions.
Cephalic disorders are not necessarily caused by a single factor but may be influenced by hereditary or genetic conditions or by environmental exposures during pregnancy such as medication taken by the mother, maternal infection, or exposure to radiation. Some cephalic disorders occur when the cranial sutures join prematurely. Most cephalic disorders are caused by a disturbance that occurs very early in the development of the fetal nervous system.
Damage to the developing nervous system is a major cause of chronic, disabling disorders and, sometimes, death in infants, children, and even adults. The degree to which damage to the developing nervous system harms the mind and body varies enormously. Many disabilities are mild enough to allow those afflicted to eventually function independently in society. Others are not. Some infants, children, and adults die, others remain totally disabled, and an even larger population is partially disabled, functioning well below normal capacity throughout life.
How Does Anencephaly Occur
Sometimes called open skull, anencephaly happens when the upper part of the neural tube doesnt close completely during the babys development. The neural tube is a flat piece of tissue that grows into a tube and forms the brain and spinal cord. Without a closed tube, the brain and skull dont develop.
Like all neural tube defects, anencephaly occurs during the third and fourth weeks of pregnancy. The rest of the babys body continues to form and grow as the pregnancy progresses.
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The Day That Changed Everything
Krysta and Derek, of Cleveland, Tennessee, have only been together for a year and a half, but right away, their bond was special.
I work at a gas station, and he was a frequent customer, she explains. He started coming in more, and eventually asked me out we moved in together shortly thereafter.
Almost immediately, they talked about starting a family.
Because Krista suffers from polycystic ovarian syndrome, a condition that can make pregnancy difficult, they didnt expect it to happen right away. But in September 2017, she got a positive pregnancy test.
We were surprised and excited, Krista says. But 10 weeks later, I miscarried. It was devastating, but we knew we wanted to become parents. When I got pregnant with Rylei we were so excited, but so nervous, too.
The pregnancy progressed normally, and at 16 weeks, they found out the babys gender. But one week later, their world was turned upside down.
They called me about my quad screen , Krista explains. And they said it came back abnormal, they suspected a neural tube defect like spina bifida. I went to see a high-risk doctor, and noticed that the nurse was acting strange while checking me. She spent a lot of time looking at Rylei’s head. Thats when they told me it wasnt spina bifida it was anencephaly.
The couple had two options induce labor and deliver Rylei at 18 weeks or continue with the pregnancy and hope for the best.
The Central Nervous System
The central nervous system consists of the brain and spinal cord. Both are wrapped in a thin lining called meninges and are surrounded by a fluid called cerebrospinal fluid. The brain is attached to the spinal cord by the brain stem, located at the base of the brain. The spinal cord runs the length of the backbone and is protected by the bones of the spine. Nerves branch off from the spinal cord into the parts of the body.
What Is An Encephalocele
An encephalocele is a birth defect that affects the brain. It occurs early in a womans pregnancy when part of the babys skull does not close all the way. Part of the babys brain may come through the hole in the skull. Sometimes, part of the membrane that covers the brain and spinal cord and cerebrospinal fluid also come through the hole in the skull.
Normally, a babys brain and spinal cord develop inside a structure called the neural tube. When the neural tube does not close the normal way, part of the brain may stick outside the neural tube. Either skin or a thin membrane covers the part of the brain that is outside the skull. Doctors call this covering a sac.
An encephalocele can be in any of these places:
- In the base of the skull
- In the area of the nose, sinuses and forehead
- From the top of the skull around to the back of the skull at the midline
Florida ‘miracle Baby’ Born Without Most Of His Brain Beating The Odds
Doctors didn’t think little Jaxon Buell would live longer than one week.
‘Miracle Baby’ Born Without Most of His Brain Defying Odds
— For Brandon and Brittany Buell, the first serious curveball of parenthood came the day after their 17-week ultrasound.
It was the scan where the couple found out they were having a baby boy, and the day they learned something could be seriously wrong with his health.
The ultrasound tech was acting strange, said Brittany Buell, 27. She got really quiet and when she got to his head and was measuring it. She didnt say a word.
The next morning, Brittany said she got a call from the doctor, who told her that her son had spina bifida — a diagnosis that would later turn out to be incorrect. The actual diagnosis turned out to be much more severe.
The ultrasound indicated that the babys brain was not forming properly. In fact, it was almost non-existent.
The Buells, who are from Orlando, Florida, said they began seeing specialty doctors, and at about 23 weeks into her pregnancy, who gently brought up the word termination.
We had the option to terminate in the state of Florida until 24 weeks because of medical reasons, Brittany said.
The Buells asked the doctors if the baby was suffering, was he in any sort of pain. The doctors said no.
So the Buells decided to take it one step at a time and went through with the pregnancy.
Sometimes he suffers from mild seizures.
Every day is precious, he said.
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