Expecting Multiples

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A Roadmap for Grieving Loss of Multiple-birth Children


infants-by-graveThis article by Elizabeth A. Pector, M.D., a Family Physician of Naperville, IL, discusses how the loss of a child or children (during pregnancy, at birth, or in infancy) affects the family of multiple birth children. Dr. Pector is an active member of the MOST Professional Advisory Board and a mother to two sons: one a surviving twin.

 

Intro by Dr Pector:

The death of multiple-birth children is a tragic event for parents and families.  This article, shortened from an original written in 2001, is a broad overview of the journey toward healing from loss of one or more children from a multiple pregnancy, based on expert opinion from clinicians, perinatal bereavement support professionals, and peer support organizations for multiples and bereaved parents. Every situation and every person is different. Complex considerations within twin or higher-multiple pregnancies make it even harder to predict what you might feel, and when. As you read this, focus on what applies to your situation.  (more…)

Are you ready for RSV season?

Preemie NICUAlthough RSV is the most common cause of respiratory tract infection in children under five years of age, most people are unfamiliar with the disease. RSV can be particularly serious in infants born prematurely, which of course, means most multiple births. Find information and resources on our PreemieCare page.

Genetic Insights May Help Lessen Developmental Delays

parent and child readRecently Canadian researchers found a precise genetic cause for seven out of every 10 children suffering from a previously undiagnosed condition that caused developmental delays.

In many cases, the genetic analysis led to groundbreaking discoveries. Researchers discovered 11 new disease genes linked to developmental delays, and described new physical traits and symptoms for a number of known diseases.

The investigators recruited 41 children who were suffering from these delays, which could range from delayed walking and talking, to more severe problems like epilepsy or autism, explained senior researcher Dr. Clara van Karnebeek, pediatrician and biochemical geneticist at BC Children’s Hospital and principal investigator with the Center for Molecular Medicine and Therapeutics at the University of British Columbia.

Using traditional urine and blood tests, the researchers screened the children for 90 known metabolic diseases tied to developmental delay, and found that based on those tests, the children didn’t qualify for any of the known illnesses.

The researchers then performed an analysis of the children’s exome, the part of their genetic structure that guides the creation of proteins essential for the body to function properly.

Thanks to the genetic results, researchers were able to help 17 of the 41 children with treatments aimed directly at their genetic condition, she said.

“One of the parents explained the difference she saw in her son before and after,” van Karnebeek said. “Before, he was head-banging thousands of times a day, injuring himself. Afterwards, he calmed down. He was able to come home and have dinner with the family and watch TV.”

Many large medical centers and commercial labs are able to conduct these sorts of analyses for children with previously undiagnosed developmental problems, she said.

However, the genetic screen is expensive at this time, costing a couple of thousand dollars, on average, van Karnebeek added.

Dr. Edward McCabe, chief medical officer for the March of Dimes, called the study an “impressive investigation.”

“As sequencing gets cheaper, it’s the way we need to go to identify the cause of disorders in these patients,” McCabe said.

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Umbilical Cord ‘Milking’ Improves Blood Flow in Preterm Infants

Preemie NICUA technique to increase the flow of blood from the umbilical cord into the infant’s circulatory system improves blood pressure and red blood cell levels in preterm infants delivered by cesarean section, according to a study funded by the National Institutes of Health.

The technique, known as cord milking, consists of encircling the cord with thumb and forefingers, gently squeezing, and slowly pushing the blood through the cord to the infant’s abdomen. For infants delivered by cesarean, cord milking appears to offer benefits over the standard practice of waiting 45 to 60 seconds before clamping and then cutting the umbilical cord. These benefits, which include greater blood flow to and from the heart, higher red blood cell level, and higher blood pressure, were seen only in the infants delivered by cesarean. Among a smaller number of vaginal births, the researchers found no difference in blood volume between infants undergoing cord milking and those undergoing delayed cord clamping.

Delaying umbilical cord clamping by 30 to 60 seconds is thought to allow sufficient time for blood from the umbilical cord to fill the blood vessels in the infant’s lungs, Dr. Tonse Raju, chief of the Eunice Kennedy Shriver National Institute of Child Health and Human Development Pregnancy and Perinatology Branch, said. Among preterm infants, the delay is believed to protect from intraventricular hemorrhage, or bleeding in the ventricles — the cavities inside the infant’s brain. The hemorrhage is thought to result from low blood pressure, brought on by having too little blood in the circulatory system. Bleeding in the brain may result in developmental delays, cerebral palsy, and in severe cases, death.

However, Dr. Anup C. Katheria, M.D., a neonatologist at the Neonatal Research Institute at the Sharp Mary Birch Hospital and the study’s first author, noted that some studies failed to find a reduction in intraventricular hemorrhage from delayed cord clamping among preterm infants delivered by cesarean. The scientists theorized that the use of an anesthetic in cesarean delivery reduces uterine contractions, and in so doing hinders the exodus of blood from the umbilical cord. Cord milking, they reasoned, might compensate for diminished blood flow through the umbilical cord and increase the amount of blood available to the infant.

Read more on the study.

5 Things Your Baby Should Avoid In The NICU

NICU babyIf you’ve got a baby in the neonatal intensive care unit, your first thought is probably not, “Does my child really need that antireflux medication?”

But antireflux meds in for newborns topped the list of five overused tests or treatments released Monday as part of the “Choosing Wisely” program. About one-third of health care spending in the United States is overuse and waste, costing about $2.7 trillion a year.

“With newborns, there’s very little evidence that routine use will improve the symptoms,” says DeWayne Pursley, chief neonatologist at Beth Israel Deaconess Medical Center and senior author on the paper, which was published in Pediatrics.

In other words, babies spit up. There’s evidence that giving newborns antireflux medications doesn’t reduce the risk of apnea or low blood oxygen, the two problems it’s typically prescribed for in preemies. And it could cause long-term harm, Pursley says.

The other four tests and treatments to avoid doing routinely are:

• Antibiotics for more than 48 hours in babies who don’t have evidence of a bacterial infection.
• Overnight breathing studies for assessing apnea in premature infants before they go home.
• Daily chest X-rays for infants who are intubated, unless there’s a specific problem that needs to be investigated.
• Screening brain MRIs when babies reach their term equivalent age, or at discharge from the hospital.

That’s not to say that no infant should ever get these, Pursley says. “But our gripe, if you will, is their routine use.”

So what are parents to do when they’ve got a child in the NICU and they’re facing dozens of mysterious tests or treatments? Parents can ask if they can do rounds with the medical team, Pursley says, which is an increasingly common practice in NICUs. That way they’ll hear how the care team assesses the child’s progress and how they do their planning. “It provides [parents] an opportunity to ask why certain tests and treatments are being done.”

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March 15th, 2016|Expecting Multiples, Multiples in the NICU|