Newborn Screening for Congenital Heart Defect

[JustBringIt-N7]

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[Kagami-chan]

ohhhh help you up this thread up

Thank you so much, and thank you so much for taking time to stop by this thread. Please spread the word~ Thanks!

[Kagami-chan]

Woman wants hospitals to test newborns' oxygen levels

When Sophia “Sophie” Isabella Capo was born at Aultman Hospital last May, she appeared to be healthy, her parents said.

She weighed 7 pounds, four ounces, and cried like other babies. Her vital signs appeared normal.

But within 36 hours, a pulse oximeter device showed the percentage of oxygen saturation in her blood was dangerously declining.

She wouldn’t wake up for her feedings. Her lips turned blue. Her legs and toes turned purple.

Sophie was flown to the Cleveland Clinic’s Children’s Hospital, which has a special pediatric cardiology unit. Doctors diagnosed a serious heart defect — known as the coarctation of the aorta, a condition where part of the heart is narrower than normal.

With her blood flow severely limited, her kidneys failed. Sophie later went into cardiogenic shock and died at 15 days of age in her mother’s arms.

Since her devastating loss, Sophie’s mother, Lauren Capo of Lake Township, has become a top local advocate for Senate Bill 4. The legislation sponsored by State Sen. Scott Oelslager, R-North Canton, and State Sen. Gayle Manning, R-North Ridgeville, would require that all Ohio hospitals and birth centers perform pulse oximetry screening on all newborns before they’re discharged. Parents could refuse the test for religious reasons.

Capo says she plans to testify Wednesday in support of the bill before the Ohio House Health and Aging Committee.

Last week the House approved a state budget bill, which includes a provision similar to SB 4 that would require hospitals “conduct a critical congenital hearts defects screening on each newborn” born at the hospital right after 24 hours of age. It does not say the hospital has to use the pulse oximetry test. But the Ohio Department of Health could determine which tests could be used.

Ohio Health Department spokeswoman Tessie Pollock said her agency asked for the language to be included in the governor’s budget proposal as part of its effort to reduce infant mortality. She said the state requires hospitals now test newborns for 35 disorders, and congenital heart defects cause 5 percent of infant deaths in the state.

TWO WEEKS OF LIFE

Capo said if not for the pulse oximetry monitoring, her daughter would have been discharged and she could have suddenly died at home.

“We got 15 days with her. Fifteen days to memorize her face. To hold her hand, and to be her parents.” Capo said.

She added that her two other children, Maryn, 7, and Anthony, 4, were able to visit their baby sister. Her husband, Tony, celebrated his 36th birthday at the baby’s side. The hospital chaplain baptized Sophie, who at times wrapped her tiny hand around her mother’s finger. Even while hooked up to the ventilator and dialysis machines, the baby opened her eyes and wiggled her feet and toes in response to her father’s voice.

“I wouldn’t trade those 15 days that (the testing) bought us for anything,” said Lauren Capo. “We were able to create some family moments in those 15 days.”

Capo, who was hospitalized for delivery complications, said Sophie was only on pulse oximetry monitoring because during her pregnancy, doctors had discovered Sophie had another congenital heart defect, known as atrioventricular canal defect, where she had holes between heart chambers. She would have needed open heart surgery three months after her birth.

This year, Aultman Hospital started requiring pulse oximetry screening for all newborns, as recommended by the American Academy of Pediatrics, according to Aultman spokeswoman Tiffany Zingg.

Mercy Medical Center spokeswoman Cindy Hickey said due to the academy’s recommendation, Mercy started in September requiring all newborns get this screening 24 hours after delivery. She said many Mercy doctors were routinely performing the test before September.

Because the pulse oximetry test led doctors to discover the second heart defect, “we have peace of mind we did everything we absolutely could,” said Tony Capo. “We know every single test was performed on her, and knowing no stone was left unturned.”

A pulse oximeter device uses a clamp or Bandaid-like adhesive that’s placed over a hand or foot, Capo said.

The device then sends a beam of red and infrared light into body tissue. Because blood hemoglobin with oxygen absorbs infrared light, but red light goes through oxygenated blood cells, the device can calculate the oxygen level in blood. A low oxygen level indicates a heart or breathing problem.

Iqbal Choudhry, a pediatric cardiologist in Jackson Township, said pulse oximetry poses no risk to the child, is non-invasive and does not involve the drawing of blood.

Cresha Auck, director of government relations for the American Heart Association which backs SB 4, said at least eight other states have passed laws generally requiring pulse oximetry testing for babies soon after they’re born.

It’s not clear how many of Ohio’s hospitals are doing the testing as part of routine screening. Auck said no law requires them to report this information to the state. SB 4 would require hospitals promptly report the pulse oximetry screening results to the newborn’s parents, the attending physician and the Ohio Department of Health.

Auck said each test, which takes about 90 seconds, costs about $5 for the disposable sensor and the nurse’s time. She said nearly every hospital has the equipment.

The Ohio Hospital Association’s spokesman John Palmer said the association surveyed about half of its 116 member hospitals with maternity wards and found all of the respondents were already testing all newborns with pulse oximetry.

He said the association does not oppose the state requiring hospitals to screen newborns for heart defects. But it wants the bill amended, so hospitals would be able to use an alternative test if one better than pulse oximetry were ever developed.

LOBBYING

In November, Lauren Capo called Oelslager’s office to discuss possible legislation to require pulse oximetry screening for newborns.

He said the American Heart Association had already asked him to sponsor such legislation, which he later introduced Feb. 12.

“Congenital heart defects are the No. 1 killer of infants with birth defects in the country,” said Oelslager. “So anytime we can pass legislation that can save lives we should do that.”

Oelslager’s aide asked Capo if she would be willing to testify on behalf of the bill. On March 12, Capo appeared with her husband before the Ohio Senate’s Medicaid, Health & Human Services Committee.

Capo, her leg shaking nervously, testified that SB 4 could improve children’s chances of surviving a congenital heart defect.

“We will never take (Sophie) to ballet, dance class or attend her parent teacher conferences. We will not get to see her first day of kindergarten, her first high school dance or her wedding day,” Capo said, according to her written testimony. “So we are here today as Sophie’s mommy and daddy, the only way that we are able to represent our daughter and ‘show up’ on her behalf now. If her death can affect any one of you or influence you to vote for this bill, perhaps her life can mean something to others, because it meant so much to us.”

On March 19, the Ohio Senate voted 33 to 0 to approve SB 4, sending it to the House.

If the bill becomes law, “we’ll feel our daughter had a part in something here on Earth,” said Lauren Capo. “She may not become a doctor. She may not be a teacher, but she may have saved another child’s life.”

Woman wants hospitals to test newborns' oxygen levels - Canton, OH - CantonRep.com

[cjpadriga]

tnx alot sis for this thread...

[Kagami-chan]

tnx alot sis for this thread...

Thanks for dropping by too. Hope this thread would change a single baby's life

[tricia_adm]

[Kagami-chan]

[Kagami-chan]

I would like to share this guide with you. Hope this helps in some way

The science and sound of childhood heart murmurs

[didi_tsai]

Sis Kagami-chan, if u dont mind. about ur rubella sis ba, natakdan ka ana from someone sis or u got it lang all of a sudden? What if naa raka kaila na nagka measles but wala ka natakdan eventhough buntis ka, at risk japun ka ana sis or kato lang mga natakdan ang at risk? how is it different from tipdas hangin sis? confused ko. hehe. just wanna know.

[Kagami-chan]

Sis Kagami-chan, if u dont mind. about ur rubella sis ba, natakdan ka ana from someone sis or u got it lang all of a sudden? What if naa raka kaila na nagka measles but wala ka natakdan eventhough buntis ka, at risk japun ka ana sis or kato lang mga natakdan ang at risk? how is it different from tipdas hangin sis? confused ko. hehe. just wanna know.

hi, OK this is kinda OT but I will answer for the sake of awareness....

At that time, rubella was rampant. It was even on the newspaper but I did not know about it at that time when I went home to the province that I was already pregnant. I usually am at home. So I never thought I could get rubella at that crucial time.

IF you are exposed to rubella measles while pregnant, then your baby is at risk MOST especially if you did not get the immunity/vaccine or the immunity has worn off the time you are exposed. No symptoms or with symptoms, I am not sure how it varies in the risk of the baby. Because you could also be infected with the rubella, without showing any symptoms at all but still have infected the baby.

The severity of the risk actually depends on WHEN you are exposed to the rubella measles. 1st trimester is VERY VERY crucial as this is the time when your baby is still forming. 80% of pregnancy is usually affected. 2nd trimester exposure 50% while 3rd trimester exposure poses very little risk on the baby since he is already completely formed.

What I know is that tipdas is also measles but I can't distinguish if this is baby measles or the rubella. But still, even exposure to baby measles is still risky.