Landon’s Life-Saving Jejunal Atresia Surgery

Lizette Lough, experiencing a seemingly normal pregnancy, was making final preparations to welcome her first baby, when her water unexpectedly broke at 33 weeks. She was rushed to San Antonio Regional Hospital in Upland, close to home, where her son Landon was born early on May 3, 2016.

After a few days in the hospital, Lizette and her husband Sean noticed the baby had not made a bowel movement. Tests revealed that Landon had an obstruction in his intestine. His physician recommended Landon be transferred immediately to CHOC for an emergency surgery with Dr. Peter Yu, a pediatric general and thoracic surgeon.

“My husband and I lost it,” Lizette says. “Our baby was only three days old and weighed about 4 pounds. The thought of surgery was beyond frightening.”

Upon arrival at CHOC, the Loughs were immediately made to feel at home by the staff, who helped them find a nearby hotel. Dr. Yu explained every scenario of the complex surgery in a compassionate and confident manner, the Loughs recall.

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Landon was born at 33 weeks and diagnosed with jejunal atresia, despite prenatal genetic testing and a healthy pregnancy.

“Landon was in stable condition when he arrived at CHOC, and I’m very pleased that our expert transport team was able to get him here quickly and safely. If there had been a delay in transfer, Landon could have become very sick and it’s very possible that more of his intestine could have died. If that would’ve happened, he may not have had enough bowel to adequately digest food, which can be incompatible with life,” Dr. Yu says.

Landon was diagnosed with jejunal atresia, a rare condition – approximately 1 in 5,000 births – in which the small intestine is incompletely developed, leading to one or more gaps, or blockages, in the intestinal tract.

Lizette had gone through the required genetic tests prior to Landon’s birth, and jejunal atresia – often diagnosed prenatally – was not detected.

Additionally, Landon had malrotation of his intestines, which failed to coil in the proper position in the abdomen. This led to twisting of his bowel. If surgery had been delayed for longer, Landon could have died.

Landon’s surgery involved making an incision on his abdomen, examining the entire length of his intestine and untwisting it, removing the dead bowel, stitching together his small intestine, and performing a Ladd’s procedure. A Ladd’s procedure places the intestines back into the abdomen in a safe configuration to prevent future twisting of the bowel.

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Landon and his dad Sean in the surgical NICU at CHOC after Landon’s jejunal atresia surgery

Sean, who works as a law enforcement officer, recalls how traumatic this was for his family. “I’m used to working in stressful situations, but this was a different kind of stress,” he says. “We were so happy that our baby had a successful surgery and that he was better. However, we were still waiting for him to have his first bowel movement. We were trying to stay positive.”

After his first bowel movement indicated that his intestines were recovering well, and spending about a month in CHOC’s surgical NICU, Landon was finally able to go home with his family.

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Landon and his mom Lizette during his first feeding, which took place in the surgical NICU at CHOC after his jejunal atresia surgery

“It takes a team to successfully care for sick babies and complex patients,” Dr. Yu explains. “Landon would not have had the excellent outcome that he had without our wonderful neonatologists, experienced and skilled pediatric anesthesiologists, Melissa Powell, our dedicated surgical neonatal nurse practitioner, and the outstanding NICU nurses who have dedicated their lives to taking care of newborn babies such as Landon and countless others. Together, we have the only dedicated surgical NICU in the area, with a special focus on taking care of newborns with surgical problems.”

Thanks to the expert multidisciplinary care provided at CHOC, today Landon is a happy baby, meeting all his milestones. The Loughs are enjoying their brave little boy, and look forward to his first birthday next month.

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Landon is looking forward to celebrating his first birthday at home with his parents.

“Dr. Yu and the nurses in the NICU were so empathetic and amazing. They saw us through so much throughout our stay and we will forever be thankful,” Lizette says.

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Landon on his first day of preschool.
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Will Your Newborn Need Surgery? Plan Now

The news comes as a shock, usually during the first prenatal ultrasound between the 16th and 20th week of pregnancy. Treatment planning, however, cannot begin too soon when a developing baby is diagnosed with a complex birth defect.

 

Some babies are born with complex conditions requiring surgery during the first few hours following birth. From the moment prenatal testing reveals an abnormality, CHOC Children’s is ready to help with the prenatal care and birth planning necessary to ensure the best-possible outcome.

CHOC has a trained and experienced team that includes perinatologists, neonatologists, pediatric surgeons and NICU nurses to guide families through the months before delivery. And families are essential to the planning process.

“The well-being of the child is surprisingly dependent on the well-being of the family, both psychologically and emotionally,” said Dr. David Gibbs, division chief, pediatric surgery, CHOC Children’s Specialists. “Preparation helps the family cope better, and the family that is coping better is able to provide better care for their child.”

According to Dr. Gibbs, recent advances in the care and outlook for babies born with abnormalities have come from closer prenatal coordination with perinatologists and families, combined with highly specialized neonatal intensive care. The CHOC NICU is rated by the American Academy of Pediatrics as a Level 4 NICU, the highest designation available and given only to facilities that also provide onsite surgical repair of serious congenital or acquired malformations.

That immediate access to the full NICU medical team, resources and support is critical for babies born with gastroschisis, a condition that requires surgery within the first hour following birth, and omphalocele, which must be corrected within the first few days. For the smallest and sickest, CHOC’s Small Baby Unit offers additional support to help babies grow and recover more quickly with fewer infections and setbacks.

For babies born with congenital diaphragmatic hernia, the CHOC Surgical NICU provides the optimal environment in which to stabilize and gain strength before surgery. One special room inside the CHOC NICU converts into a state-of-the-art operating room, allowing pediatric surgeons to perform delicate procedures within the unit.

And babies born with congenital cystic adenomatoid malformation (CCAM) may actually get to go home for continued evaluation months before surgery.

Deciding Where You’ll Deliver

Dr. Gibbs added that an important element of prenatal planning is deciding in advance where your baby will be born. Moms who know their baby will need surgery may choose to deliver at a hospital that is near a pediatric facility like CHOC. When the baby is born, the CHOC Transport Team is ready 24 hours a day to transport the baby to CHOC from hospitals throughout the region. Specially trained and equipped, this team uses ground and air transportation to travel to and from hospitals throughout Orange, Los Angeles, Riverside, San Bernardino and San Diego counties — and even beyond.

“We expect most children will do well and have normal lives,” Dr. Gibbs said. “But the first step is meeting with the perinatologist, pediatric surgeon and NICU team. Starting that relationship as soon as possible will make the process of coping with what may seem to be an overwhelming process a lot easier.”

CHOC’s surgeons provide cardiothoracic surgery, gastrointestinal (GI) surgery, general surgery, neurosurgery, urological surgery, otolaryngological (ENT) surgery, plastic surgery, ophthalmologic surgery and orthopaedic surgery.

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Alicia’s Story: Repairing a Right-Sided Congenital Diaphragmatic Hernia

CHOC Surgical NICUAlicia was born at full term, beautiful with 10 fingers, 10 toes and a life-threatening defect buried inside her tiny chest.

She had a congenital diaphragmatic hernia (CDH), a condition where a hole in the diaphragm allows abdominal organs to move into the chest. And this case was especially serious.

Though less common, hernias on the body’s right side are more dangerous because the liver, a larger organ, can move into the chest cavity, impairing lung development, impeding blood vessel functionality and ultimately causing pulmonary hypertension, says Dr. Mustafa Kabeer, Alicia’s surgeon at CHOC Children’s.

Just 20 percent of CDH cases are right-sided, and about 40-50 percent of babies nationwide survive their treatment; conversely, more common left-sided hernias yield about an 80-90 percent survival rate, Dr. Kabeer says.

Prenatal meetings remain key

After the diagnosis, Alicia’s mother Marlen began meeting with Dr. Kabeer and other specialists to prepare for her baby’s birth and treatment afterward.

“It helped because we had the prenatal meeting,” Dr. Kabeer says. “That way, parents can connect a face to a particular job in the care of their baby. They are educated and know what to expect during treatment.”

Just hours after her birth, Alicia’s condition began dramatically deteriorating. A transfer to CHOC was necessary, and Marlen and her husband were warned that Alicia would not likely survive the 2-mile ambulance ride.

But she made it, and quickly began treatment under a life-saving device called extracorporeal membrane oxygenation (ECMO) to help her compromised lungs. First pioneered at CHOC about 40 years ago, ECMO is a heart and lung bypass machine that can be used to rest a failing heart or lungs, providing complete support until the organs recover.

About a week later, Dr. Kabeer performed the procedure to repair the diaphragmatic hernia, all while Alicia remained on ECMO with substantially high risks of uncontrollable bleeding due to the blood thinners needed while on the treatment.

Alicia sailed through the surgery with little bleeding, but within the next day or so, Dr. Kabeer needed to perform two separate procedures to relieve pressure building inside her abdomen that compromised blood flow to the lower half of her body.

Two weeks old and five surgeries

Shortly after this surgery, Alicia began to bleed. During the next four days, she had ongoing bleeding and during the fourth day, lost about 1,500 mL of blood, or about six times her normal blood volume. Hospital staff kept her stable, and Alicia was taken off of ECMO. Two days later, Dr. Kabeer performed a final surgery to close her abdomen, which had been left open all of this time to decrease pressure.

“All of those surgeries were very high-risk surgeries,” Marlen says. “There was a very high chance she wouldn’t make it, but she did perfectly.”

Throughout the entire process, Dr. Kabeer communicated with Marlen and Omar about the risks of the surgeries. And like every other time Alicia’s parents were cautioned about her survival, the tiny infant fought back.

Baby Alicia today.
Baby Alicia a few months after her surgeries.

“Even though it’s a difficult subject, and a complicated, emotional and anxiety-provoking issue, we want parents to understand the problem their child is facing and that we’re trying to help them and their baby overcome it,” Dr. Kabeer says. “That connection and rapport are very important and it all stems from honesty.”

“It involved a very transparent discussion,” Dr. Kabeer said. “I laid out for them all of the issues and all of my concerns, and made them see that we’re going to do our best and face these challenges together. I want to give parents reassurance and security to know that not only are they in a good place, but they’re with staff who are well trained.”

Coordinated care in the Surgical NICU

Between her five surgeries and afterward, Alicia was closely monitored inside CHOC’s Surgical Neonatal Intensive Care Unit, a special part of the hospital’s main NICU dedicated to the care of babies who need surgery.

In the unit, the team cares for patients jointly, discussing the cases of children like Alicia as a group and forming a treatment plan that often calls for the expertise of other specialties at CHOC.

After several months in the Surgical NICU, Alicia went home with her family. Today, she is a happy, charismatic four-year-old.

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Today, Alicia is a thriving four-year-old.

“Alicia’s case reinforces the fact that babies are extremely resilient,” Dr. Kabeer says. “It’s amazing that she tolerated all of this. Every patient is unique and this is a perfect example of why we should give them every chance possible.”

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Matthew’s Story: Healing in the Surgical NICU

babies surgeryGrace Wu beams as she watches her son Matthew smiling and happy after enjoying his bottle.

“It’s good to see him so happy and active,” she says. “That he could do that makes me very, very happy.”

It’s a marked change from the days following Matthew’s birth almost four months ago.

As a newborn, he was diagnosed with volvulus, a condition wherein the intestine is twisted and can ultimately cut off blood circulation. Symptoms of volvulus include a distended stomach and intolerance to feeding, which Matthew exhibited.

The baby was quickly transferred to CHOC Children’s for emergency surgery at just three days old. CHOC surgeon Dr. Saeed-Ur-Rehman Awan repaired the malformation by performing an ileostomy, wherein the intestine is brought outside the body.

Next, Matthew needed time to heal his organs. He spent the next three months recovering in CHOC’s Surgical Neonatal Intensive Care Unit, a special part of the hospital’s main NICU dedicated to the care of babies who need surgery.

There, Matthew was under the care of a multidisciplinary team that included Dr. Irfan Ahmad, a CHOC neonatologist and co-director of the surgical NICU, and many other clinicians.

In the unit, the team cares for patients jointly, discussing the cases of children like Matthew as a group and forming a treatment plan that often calls for the expertise of other specialties at CHOC.

Another key component of the surgical NICU care team is parents and families. In Matthew’s case, his parents and grandfather, Jerry, partnered with clinicians on every stage of the baby’s care.

“Jerry was there every single day holding Matthew – even when he was crying,” Dr. Ahmad says. “He was a great member of the team, and he provided a lot of support.”

As Matthew began eating orally in small volumes as well as through intravenous methods, he geared up for a second surgery that would reattach his intestines. That procedure was performed just three months after the first.

After several more weeks of recovery, Matthew was able to eat fully from a bottle and was on his way home, much to the relief of his family.

“I was very worried because for the first time, I thought I might lose him,” Grace says. “I am very thankful for the care he’s received.”

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CHOC’s Surgical NICU Offers Pioneering Coordinated Treatment

ICHOC Children's Surgical NICU nfants needing surgery require special attention, and a unique feature of CHOC’s Neonatal Intensive Care Unit (NICU) provides just that.

CHOC’s Surgical NICU, a dedicated space within the NICU, uses a comprehensive approach to care for these tiny patients. A coordinated treatment protocol – used in many adult intensive care units nationwide – has shown to result in fewer patient complications, better outcomes and faster discharges. And, CHOC’s Surgical NICU physicians and staff continue to research new ways to make the care even better.

“CHOC has one of the only two Surgical NICUs like it at any children’s hospital in the country,” says Dr. Mustafa H. Kabeer, who with Dr. Irfan Ahmad, a neonatologist, co-directs the Surgical NICU at CHOC.

“We have a room dedicated with eight beds and a second room with two beds that allow for surgeries to be done right there in the NICU. It’s a unique setting in which we have multi-disciplinary, coordinated care.”

“Babies in the NICU are very critical to start with and things can change minute by minute. When you add in the risks of surgery, it becomes more complex. We coordinate care through better communication with physicians and the nurses and the family. We involve all of these groups so everybody is on the same page. We have joint rounds with residents and fellows, and have initiatives on research and teaching, with monthly lectures on select topics. We are collecting data on outcomes and how the babies do,” says Dr. Kabeer.

Dr. Ahmad adds, “The experience has been so positive. We are all really happy with the care our patients are receiving. The surgeries and anesthesia have become safer.”

In a new effort, CHOC’s Surgical NICU team has begun a new research project to examine better pain control for babies following surgery. “This is going to be really big and is being planned by Dr. Kabeer from surgery, myself from neonatology, and Dr. Rebecca Sangster from anesthesia,” says Dr. Ahmad.

Other projects include investigating ways to decrease the occurrence of hypothermia, or low body temperatures, for babies having surgery. In addition, the Surgical NICU staff is maintaining a patient database that will help the staff design future quality improvement projects and clinical studies.

The Surgical NICU is special in other ways. Patient rounds there often include a dozen or more specialists who join the physician and nurses. “These rounds are very different than what goes on anywhere else. We try to educate the families about what this means and how unique this is,” says Dr.  Kabeer.

Babies in CHOC’s Surgical NICU receive consistent and coordinated care from a multidisciplinary healthcare team that includes neonatologists, nurses, surgeons, respiratory therapists, nutritionists and other specialists who may be needed. Parents and family members round out the team. The family joins the clinicians to discuss care plans, share information and make care decisions. Each patient receives a well-coordinated and consistent treatment plan.

Pediatric surgeons perform many types of surgeries in the Surgical NICU, including lung and thoracic surgeries, robotics surgeries, head and neck surgeries, repairs of umbilical and inguinal hernias, among a variety of different operations.

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