"Gastroschisis is an easy fix”
“If you had to pick a birth defect, gastroschisis would be the one.”
“Once we close the baby up and you go home, you have nothing else to worry about.”
These were the responses from practitioners seven years ago when at 12 weeks we found out our son, Avery would be born with gastroschisis. Now, seven years later, our foundation gets 1-2 families a week getting this same input from their physician. And it does not end up being true.
Gastroschisis is one of the more visceral birth defects in the world. The defect is a hole in the abdominal wall that can range in size that causes the intestines, and sometimes other organs to protrude out of the body. The medical community does not know what causes the abdominal wall to not close down completely around the umbilical cord as it should in normal development. The survival rate is 80-90%, with about 40% experiencing long-term complications across a spectrum.
The trends are on the upswing too- state side 1990 it was 1 in 10,000. Then in 2011 it was 1 in 2229. Earlier this year the CDC reported that in 14 states, there was a 30% increase in the disease across all demographics. However, gastroschisis is a rare disease. A rare disease is defined as a disease that affects less than 200,000 people at one time. The CDC reports that 1,871 babies are affected by gastroschisis a year. Which frustrates research- trends are up, but the sample sizes to study are very small.
This might sound like a lot of numbers to you, but they really mean everything to our population. When you are one of 7,000 rare diseases it means that the knowledge (much less correct pronunciation) on gastroschisis is not going to be pervasive. Initially, it means our expecting parents will have to travel cities away, some even states away for their child’s initial treatment at birth. That stay could be 3 weeks (on average about 6-8) or 740+ days. Being a rare disease also means our parents cannot walk into their local Urgent Care with a child who has a compacted bowel, fever or vomiting, and find a practitioner that has had experience treating a gastroschisis affected gut (and believe me, that does matter.) For any other child, vomiting and fever would normally mean a bug, for our children it could mean intussusception, volvulus, or obstruction. Things most doctors rarely see.
Simply put, gastroschisis means there are no road maps.
To test this "easy fix" idea, Avery’s Angels recently asked some of it’s 12,000 social media followers to submit a simple sample: 1) Baby’s Name 2) Date of birth 3) Date until first hold 3) Days in the NICU 4) Number of Surgeries 5) Any long term complications. We have had over 200 responses and no 2 are alike. Some families went 2-3 weeks before first holding their child, while others were in the unit and discharged in that time. Some babies had little complications after discharge, some have spent upwards of 15 years in and out of the hospital. Out of the 200 submissions, no 2 were the same.
And, as one parent put it, none of the experiences were “easy.”
With this in mind, that I could not speak about one experience for all, I asked our families to weigh into this piece. What would you want the world to know? What would you want an expecting family to know?
The overwhelming consensus was this:
Expect anything. Outcomes cannot be promised. This defect is not an "easy fix" no matter what you get handed. You never get to “leave it behind,” you’ll watch every poop, fever and vomit with caution, and with good reason. Don’t consult Dr. Facebook, know where your knowledgeable physician is, find that person and build that relationship. Ask questions. If you have to, ask the same question over and over.
You’ll be terrified at some points, and that is OK. You find out that you have a strength in you that you never knew you were capable of, and sometimes your child will lead you through that as they endure their trial. When you need to, seek support from the gastroschisis community. Even though every journey is different, there is commonality in the journey still, and it helps to know you’re not alone.
The “easy” part of gastroschisis is the love that comes, unconditionally, for a tiny baby born inside out, that teaches you how to love from the inside out. There is an amazing and fiercely loyal tribe of gastroschisis families and survivors that have come together over the years, to support one another, to help others get to the right people who can help. These are the parts where good starts to shine through. When you cannot have a road map as to where you are going, it helps to have a tribe to walk with you along the way.
We have a lot to accomplish, and an uphill climb. Gastroschisis is a rare disease, meaning the science behind understanding the disease is going to take a lot of time and effort. It means that the skill set to treat this is going to be rare too. I am not worried about it though, because the families I get to serve, the patients I get to work with- survivors and angels, are relentless. The push to make up the gaps in understanding comes with a tenacity that cannot be paralleled. Some of our moms and dads even start up a new career in medicine as nurses, CNA’s, doctors and paramedics. Even more of them take up the charge to promote awareness and research. Nearly all of them turn around to give a helping hand to others struggling through. No, no one would chose this defect. But anyone would chose this tribe.
CEO/Founder Avery's Angels ® Gastroschisis Foundation
I was exactly 23 weeks pregnant when I was at work and went into active labor. As an ER nurse, I knew that the outcome of babies born this early more likely than not was not a good one. The two days I was on bed rest were filled with terrifying discussions about "viability" and the low percentage that my child would even survive outside of the delivery room. At the hospital I was admitted to, babies born at 23 weeks and 4 days had at least a sliver of a chance. Any babies born before that were too small and too premature.
After two scary days on bed rest, I was rushed into an emergency c-section. My labor had progressed past the point of no return. I don't remember much from my time in the delivery room, but I do remember hearing a nurse shout, "the baby's moving!," being told it was a boy, then giving him a quick kiss before he was rushed to the NICU and placed on a ventilator. Ryan was born at 23 weeks and 3 days, technically not a viable baby. He weighed 1 pound, 5 ounces.
Ryan spent weeks after that fighting for his life. Because he was so early, his lungs were so underdeveloped and kept shutting down. The first few weeks he was so sick and fragile he couldn't be repositioned in his isolette. His airway was so tiny any movement could dislodge his breathing tube and he wouldn't be able to get oxygen. We sat by his isolette day and night, holding our breaths every time his heart rate dropped or his oxygen plummeted.
At one point a few weeks in, Ryan's lungs continued to shut down. The doctors threw everything they could at him and he wasn't improving. The neonatologist gave us the possibility of the grim outcome, and promised to do everything they could. We prepared for the worst scenario, but the whole time Ryan kept kicking away in his isolette and fighting harder than anyone could imagine.
Miraculously, Ryan turned the corner and pulled through. His lungs were still precarious, but every day began to look better and better. After 3 weeks, he was finally stable enough that I could hold him. Holding his tiny, less than two pound body against my chest was the best moment I could have imagined.
Ryan spent 9 weeks on a ventilator before he was able to be weaned off and onto oxygen. Multiple times, he pulled out his own breathing tube. I watched him turn blue and lifeless as they struggled to get him breathing and reinsert his tube more times than I can count. Finally, one day Ryan decided enough was enough, pulled out his tube, and never looked back.
He then spent weeks on Bipap, then CPAP, then high flow oxygen, then a nasal cannula. He had to be transported to another NICU for laser eye surgery for retinopathy of prematurity. Every day he fought, and grew, and exceeded the expectations of all of the medical staff. Finally, after 146 days in the NICU, exactly one month after his due date, Ryan came home for good. No oxygen, no monitor, and no long term issues to be had.
As I sit and type this, the miracle baby that was not supposed to make it out of the delivery room is smiling and laughing away. We are forever indebted to the NICU doctors, PAs, APRNs, nurses, and staff for everything they did for Ryan and fighting as hard as he did for the best possible outcome. I'm currently in graduate school to become an APRN myself, with the hopes of working in the NICU upon graduation and pay it forward to more tiny, incredible miracles like Ryan.
Written by: Katie Vigil, mother of Ryan
Jennifer Labriola used to envy those whose life was a neat little package. Effortlessly their life was textbook, fairytale normal. How it’s supposed to be or what they thought it should be.
Jennifer’s journey through life has been overcoming hurdles – she is a reporter at heart and research has always been in her wheelhouse. When she couldn’t get pregnant, she researched infertility. When she found her insurance wouldn’t pay for it, she researched and questioned nurses about how she could save. Finally, after eight years, they put in two embryos in May of 2014, with the cautious, “Two? Maybe they should only do one” questioning of her husband, Carlo.
After years of negative pregnancy tests, she finally was pregnant, and not with one baby, but an overachieving two babies (both girls). Finally, she thought, she could start up the normal part of life, with a normal pregnancy, right?
At 24 weeks during an ultrasound the doctor told her they had a problem. She chuckled, thinking he was joking, but no, her “baby b” had intermittent absent blood flow. She was growing very slow, while baby A was doing fine. She struggled for weeks, praying to get to at least 28 weeks. The doctor kept a close eye on the babies and each time she arrived to her appointments he would joke if she’d “packed her bags” for the hospital. “No, not yet,” she’d say with a smile. Positivity was what she clung to during these stressful times.
Jennifer and the girls finally arrived at 28 weeks and during one appointment, the baby’s brain, which was being affected by the cord issue, was beginning to show normal readings. This sounded great, but the doctor looked concerned and said, “we’re having some babies today.”
Normal brain function, means the baby was giving up. We had 48 hours to remove them, or else we’d lose baby b. Patience Lucia (baby a) and Aria LaSalle (baby b) were born on Oct. 26, 2015 at 6:03 and 6:08pm via c-section. Patience, the bigger of the two, came out crying at 2lb 8oz. Aria came out with a soft cry, and weighed 1lb 10oz. She got a quick peek of the babies, but all she could remember was seeing Patience in a plastic bag and thinking how odd it was.
Their journey was just beginning, with hesitant congratulations, and an uneasy feeling from family and friends. She never once felt that the girls wouldn’t survive, she was 100% positive that they would be just fine – they were strong babies even if so tiny.
The day she got to see them she thought it would be a life changing moment, but it was more of a numbing, overloaded moment. She was overloaded with the NICU nurses crash course in the norms of their new NICU life. Wash your hands before you touch them, don’t rub their skin – it’s too sensitive right now, and be sure to talk low. It was a lot to process at one time and as she looked at the other babies and compared their weights to to the others, she realized they had the smallest babies in the NICU.
They got lucky. Their girls only had minor issues such as jaundice and both were on low-flow cannulas. A perk of having babies in the NICU is learning medical terms, in a constant state of being overwhelmed they constantly learned about the babies. They got to know the nurses, got to learn which ones they liked and spoke with doctors about care. She never asked when the girls could come home.
After a while, their weeks and days were the same – they would spend weekends at the hospital. Eat in the cafeteria, day dream about when the babies would come home. Celebrate their milestones, they soon had feeder/growers – and just like what the NICU nurses told them, it would happen fast for the girls to come home.
Patience came home first – the day they picked her up, was a stressful bittersweet day. She was happy and yet sad to have to leave her sister Aria there for another week. Patience came home on January 2 while Aria came home on the twin’s due date on January 13.
Now with both girls are home, it’s been a rollercoaster of doctor’s appointments for their development. They are good babies, with personalities and smiles and giggles that is music to their ears. Being NICU parents, she knows they have a long road ahead of us with making sure the development of the girls is on track. She always wanted a normal type of life, but now, she couldn’t imagine her life any other way. Her babies are different, they are special and she is blessed with each milestone they reach.
Necrotizing Enterocolitis is common among ill or premature infants that occurs when bacteria invades the intestine. This bacteria causes an infection and inflammation which ultimately destroys the bowel or intestine. “NEC affects one in 2,000 to 4,000 births” which ends up being “between 1 and 5% of neonatal intensive care unit admissions” .
Lucelena and Cecilia
Rebecca Casillas’s twin girls, Lucelena and Cecilia, were born at 28 weeks and 5 days. Lucy at 2lbs 8ozs and Ceci at 2lbs 2ozs. The girls had varying degrees of respiratory therapy and were making good progress on temperature stabilization, weight gain and oxygen levels. About 6 weeks into their NICU stay, both girls started losing ground and backtracking on many of the gains they had made. They moved back into incubators from an open bed, off of room air back to O2 all within 2-3 days of each other. They both were diagnosed with medical necrotizing enterocolitis (NEC) and began a 7-10 day treatment of antibiotics.
It was so hard for Rebecca and her family to see the girls go back to the IV fluids (total parenteral nutrition) after they were getting the hang of bottle and breast feeding. It was equally hard for them to know the taste of milk and feeling of a full belly and then everything be taken away. There were many scares with x-rays of their bowels that got worse before they got better and once they were cleared for feedings again, we had to start slowly and build everything back up from what seemed like Day 1. But as most things go in the NICU, we took it one day at a time and miraculously, on their original due date, the girls were able to come home with very few issues.
They are now both thriving at 16mo olds and enjoying each day as they learn and grow, progressively acting more and more like their actual age vs the age adjusted for their prematurity. The Casillas family is so thankful to the medical team at Magee Women's Hospital that caught this issue before it became surgical. It is truly amazing how strong the fight is in these children and how inspiring they can be. Rebecca hopes that their story gives those going through a similar situation comfort. They are sending good vibes out to all those still fighting.
Easton and Isabella
Easton and Isabella were born on April 2, 2016 at 23 weeks 1 day. They each weighed 1lb 7oz and 11 inches in length. Isabella was Rachael Erickson’s lung girl, she had a patent ductus arteriosus (pda) that closed, a chest tube inserted within the first 2 weeks, pneumonia and a run in with NEC. It took 3 rounds of steroids at different times to get Isabella on low flow O2. They thought she would end up with a tracheotomy but fortunately her symptoms did not worsen. They eventually found that she was aspirating with her feedings. After this discovery was made the hospital team got her bottling on thickened feedings and she did great.
Easton had a grade 1 Bleed which resolved on its own, PDA which resolved on its own, Avastin injections for ROP, Ecoli from the breathing tube, and got NEC twice. Easton got NEC within the first 10 days but did not develop any perforations. He was started on feedings again however the NEC developed again. He had surgery at 2 months old and received 2 stomas. After surgery he was considered “failure to thrive” as he wasn't gaining weight and was not absorbing his feedings. His intestine protruded greatly which caused him to have another surgery 7 weeks later to reconnect. Surgery was a success and very little intestine had to be removed. Easton is now on feedings but is struggling with his breathing.
The hospital staff didn't think Easton would make it after his second run in with NEC. Now all they say is he is a miracle. Isabella came home at 9lbs at 137 days old, she is on low flow O2 but doing great.
When Kelly Guzman discovered she was pregnant she was overjoyed, and since it was her first, she was blissfully unaware that anything could go wrong. According to her, it was a difficult pregnancy; she lost weight and barely had an appetite. But she continued to visit her physician who assured her everything was going smoothly. At her 20 week exam she discovered they were expecting a boy, who her and her partner named Joshua. The doctors also thought they noticed some abnormalities, and became insistent that the baby had a genetic deformity. If she didn’t miscarry, the doctors strongly recommended aborting the baby. To this, Kelly firmly resisted.
At 27 weeks, Kelly started experiencing sharp pains and debilitating nausea. As it turns out, she was suffering through the early symptoms of HELLP syndrome, and could have bled out or potentially lost the baby at any moment. A week later she underwent an emergency C- section which required 3 blood transfusions to bring her platelet count up to a survival level. Joshua was still-born, but miraculously revived, weighing just 1 pound, 11 ounces and severely jaundiced from oxygen deprivation. Joshua was so small because he was restricted to growing only on the left side of Kelly’s uterus, as she also had an undiagnosed uterine abnormality, a bicornuate uterus. Because this was her first baby, there was no way she could have ever known she had this irregularity.
After being in the St. Mary’s NICU in West Palm Beach, FL for 7 seven days, Joshua was transferred to Nicklaus Children’s Hospital in Miami, as he had suffered a grade 3 brain bleed with enlarged ventricles. Joshua’s limited oxygen also lead to an excessive amount of folding on the brain, called polymicrogyria, which can cause seizures. For the ensuing 140 days, Kelly and her partner drove the 2-3 hour drive every weekend to watch over Joshua and comfort him as best they could. Finally, at 8 weeks old and on her birthday, Kelly was able to hold her son.
They weren’t clear of all troubles yet, as Joshua still needed surgery to close a flap near his heart which had not fully healed. He had also developed chronic lung disease and bronchopulmonary dysplasia, because he was required to be on ventilator support throughout his stay in the NICU. Not being able to see Joshua daily, coupled with the fact he was kept sedated, were the hardest parts for the parents. In order to keep him calm and to help accept the life support, Joshua was on a constant drip of either morphine or fentanyl for his entire stay. The withdrawal effects of these drugs were especially painful, and the reason he needed to stay so long in the Nicklaus NICU. After 147 days in two NICUs, Joshua was finally released, weighing just over 6 pounds.
Kelly is happy to report that a year after his discharge, Joshua is doing perfectly fine, with no genetic abnormalities or residual complications. He is crawling, taking his first steps and saying his first words. After going through a pregnancy complicated by HELLP syndrome and an extensive stay in a NICU, Kelly hopes that her story can be an example of not only what can go drastically wrong, but what can go unexpectedly right.
A variety of complications can arise unexpectedly during pregnancy, causing many women to have a very difficult experience. This sometimes can be due to the personal health factors of mother, which when left unnoticed, lead to problems as the pregnancy progresses. The severity and type of challenges can truly run the gauntlet for women, from the onset of gestational diabetes, to premature labor and miscarriage, to severe and persistent nausea and vomiting (hyperemesis gravidarum).[i] One of the most critical and life-threatening problems that can occur is preeclampsia, and its severe variant HELLP syndrome, which are characterized by the sudden onset of high blood pressure and protein in the urine.
Historically, preeclampsia has always affected a certain portion of pregnant women. From the time of Hippocrates up until the 20th century, physicians were not only baffled by how these symptoms developed, but in how to treat them successfully. The most common methods were bloodletting, elimination of toxins, rest and purging. These treatments were prescribed for millennia, and did not change all that much until doctors started to understand the pathophysiological changes that are the symptoms of this condition; notably the increase in blood pressure and presence of protein in the urine. Due to their research from the second half of the 20th century up until today, physicians have learned how to better treat the symptoms, but still cannot prevent the disorder’s occurrence.[ii]
Unfortunately it is still mostly unknown how and why preeclampsia develops in pregnant women, however, doctors believe it is related to the poor development of blood vessels in the placenta. This condition affects between 5-8% of all pregnancies in the United States, and only through proper prenatal care and by watching for warning signs can it be caught early and managed.[iii]
A more acute form of preeclampsia is HELLP syndrome, (hemolysis, elevated liver enzymes, low platelet count). The symptoms of HELLP are similar to that of preeclampsia, high blood pressure and protein in the urine, but can also involve chest pain, pain when breathing, edema and uncomfortable indigestion. This particular disorder is very hard to diagnose, as its symptoms can sometimes be mistaken for the flu. If is not caught in time, it can lead to liver rupture or stroke, and put the life of the mother and child at risk. Of the 5-8% of U.S. women who will develop preeclampsia, roughly 15% of those women will develop indications of HELLP syndrome.[iv]
Since it is still unknown how these symptoms arise, it is important for physicians to consistently run blood tests and urine samples for any woman experiencing any signs of HELLP during her third trimester. Treatment options for HELLP are weighed against the gestation of the pregnancy, as the best solution for mom and baby is a delivery. Since physicians do not know precisely how and why these symptoms progess during pregnancy, there can be no way to completely prevent it. They recommend monitoring diet and exercise, and regular prenatal visits to observe blood pressure.[v] By ensuring that women are informed and aware of any changes however slight to their blood pressure, they can seek help when severe warning signs develop such as violent pains and severe nausea. By staying attentive to their bodies, women who may be experiencing the first signs of preeclampsia or HELLP will greatly increase their chances of survival and safe delivery of their baby.
In the span of a few hours, we went from giving birth to wires, tubes and beeping machines.
Our baby girl suffered hypoxic ischemic encephalopathy, or HIE, at birth, meaning her brain was damaged from a lack of oxygen and blood flow. Two to three out of every 1,000 births suffer from HIE.
This was not what we had expected, and we were terrified.
She needed oxygen. Her organs were shutting down. That first day, doctors and nurses didn’t know what would happen. She may need to be on oxygen permanently. She may not ever go home.
Our baby girl was the biggest in the NICU, but she was also one of the sickest.
For 21 days, we sat at her bedside. We fell asleep in chairs. We read books. We held her every chance we got.
We met doctor after doctor, and specialist after specialist. When we went home to sleep, we checked with her nurses on how she was doing.
Slowly, she improved.
She had gone through a treatment that cooled her core body temperature to try to save her body from further damage from her brain injury.
As the days passed, she was able to come off oxygen. Her organs began functioning again. She started to cry, a glorious sound we thought we would never tire of.
We learned how to give her medications, how to bathe her and care for the G-tube surgeons put in place.
And then, one Sunday morning, we got to go home. We watched our daughter like a hawk, wishing to go back to the beeping machines that told us when everything was alright, and when it wasn’t.
Our journey didn’t end there. We had lot of appointments with doctors, specialists and therapists that continue now, years later.
But from that day forward, we have always been a family.
We go through our ups and downs together. We celebrate together. We grieve together.
And everyday, we are grateful that our little girl is here with us.
Annie Goeller is the vice president of marketing for Hope for HIE, a nonprofit organization created to provide support to families of children with HIE.
By Elizabeth Payne
Leaving the NICU with your baby is exciting and nerve wracking all at the same time. Although this is a time to celebrate- your baby is healthy enough to go home with you!- many parents are scared by the fact that they are moving baby from an environment where they are constantly surrounded by doctors and nurses to one where they usually have only two people watching them. Your baby’s care team will help you make the transition from hospital to home, but the following guide will give you a good general idea of what to expect, as well as suggestions to help ease you into the transition.
Preparing to Go Home
If your baby was born prematurely, there are several requirements they must meet to be eligible to go home; they must be gaining weight steadily, be able to maintain their body temperature, and no longer require tube feedings; some wards will also require a minimum weight. Most children reach these milestones around their original due date, but this is not a hard and fast rule. Each baby varies and your particular child may be discharged up to a month in advance of this date, or several weeks after.
Prior to discharge, your medical care team will come up with a care plan for you and your child, which will detail the special needs your child may have and how to help with them. They will also help you determine your child’s nutritional needs, sleep, eating and medicine schedules and everything else you need to know. Remember, if you’re confused about something or want to know more about it, ask.
If your baby requires the use of medical devices at home, the medical team will train you in the use of them before you go home. You may also be trained in infant CPR if your baby has certain breathing problems; if this is necessary, your baby should always have someone trained in infant CPR with them. This means that all caretakers; you, you partner, aunts, uncles, grandparents, family friends, or anyone else who will be alone with the baby for any period of time, should be trained in how and when to perform infant CPR. The medical team will also tell you if you should be on the lookout for any particular behaviors and to react to the. Remember that you can call your doctor any time after discharge if you have any additional questions.
Before leaving the hospital, you should pick a pediatrician for your child and meet with them. It is good to establish a relationship with your child’s doctor early on and inform them of any special care they may require. The first appointment with the pediatrician should take place within a few days of discharge.
Before leaving, ensure that you have all the paperwork pertaining to your baby’s health in order, preferably in its own file; medication sheets, test results, personal notes, discharge summaries, and names and numbers of doctors and specialists. Keeping this all together now will save you later when you need it.
Help at Home
It takes a village to raise a child, and NICU babies are no exception to this. Reaching out for help from family, friends and professionals will benefit you greatly, especially during the stressful first few days at home. Some insurance companies cover the costs of a visiting nurse for new parents, which many parents find great comfort in. Visiting nurses allow you to increase your confidence in caring for your child at home, while also providing a “safety net” and assurance that you’re doing the right thing. However, even if your insurance doesn’t cover this, early intervention programs for NICU graduates will often provide free home visits that will provide you with the same level of comfort (see the early intervention section below for more details). Family and friends are also a great resource during this time. Don’t be afraid to reach out for or accept help. The people who love you understand that you still need help, and there is no shame in respectfully asking them to pick up something from the pharmacy, assist with meal preparation, or help with the household tasks you’ve fallen behind on. This is especially true if you have other children, who are probably feeling ignored in favor of their new sibling; getting help can give you more time to spend with the older kids, or will let you send them out of the house for a playdate and make them feel appreciated while you dote on baby.
Early Intervention Programs
Early intervention, or EI, programs are designed to help children who have or are at risk for developmental delays. This includes almost all NICU graduates. Your child will be evaluated, and if they meet the criteria, will be referred to an early intervention program. Remember that there is no shame in this and this in no way reflects on you. Your baby just made it through a very tough stay in the NICU and might need a bit more help in the beginning of their life. EI programs can provide myriad free services to your family that can help ease you and baby into life after the NICU, such as home visits, counseling, therapy, support groups, education, and nursing and nutritional services.
Staying cooped up at home without any visitors constantly is stressful for both you and your child. However, you will probably be nervous about taking your little NICU graduate out or having visitors over, and rightly so. Prior to hosting visitors, make sure to lay some ground rules with them, such as washing hands before visiting and again prior to holding the baby, no visits if you’re sick, and that anyone who smokes should shower and change their clothes before coming over. You should emphasize how important it is to keep your home disease free for the safety of your newborn; freely remind visitors that an adult’s little cold can be a big threat to your child, and suggest that school age children and anyone who has a sick person in their household hold off on visits for a while. Also, it is okay to gently remind your guests that your baby is on a schedule and you may need to excuse yourself to pump or feed, or possibly shoo everyone from the room when nap time rolls around. Remind them that although they may want to spend time with the baby, your child’s health is paramount and you little one needs a quiet, clean environment.
If your child is seriously immunocompromised, you may be put on quarantine until their system is healthy enough to handle everyday germs. Although this is the best option for your child’s physical health, this might take a toll on your mental health. Just because you are stuck in the house without visitors doesn’t mean you have to be lonely; try to keep in touch with friends through social media, phone calls, e-mails, anything you can think of. Encourage them to contact you and update you on their lives and share news about your family with them.
When to Call the Doctor
It is better safe than sorry. If you think that there is something wrong or have a question, call your doctor. There are many other resources available for you to use, but most of them don’t have a medical degree and don’t know your baby. You should additionally, with no second thought, call your child’s doctor if you notice that your child has yellowed skin or eyes, has a temperature of over 100 degrees F, has breathing trouble, is difficult to wake up, has blood in their vomit or diaper, or has a seizure.
By: Elizabeth Payne
It is hard to believe that only a century ago, most sickly and premature infants were sent home from the hospital without any special interventions; many of these children did not survive past their first birthday. The first neonatal intensive care units did not even appear in American hospitals until 1922; however, special care methods for infants began to be developed in the late nineteenth century.
The Pre-NICU Era (up to the 1950's)
Pierre-Constant Budin, a French obstetrician, was a pioneer in the care of at risk babies and devoted his career to reducing infant mortality. He encouraged educating new mothers about proper nutrition and hygiene for their babies, and knowing the risks contaminated cow’s milk could pose to newborns, urged the use of breast milk instead of cow’s milk, and believed that sterilized cow’s milk should be used if breast milk was insufficient. He also brought gavage- the process of feeding through a tube that went directly to the stomach- into the spotlight, helping premature infants who were unable to feed normally receive the nutrition they needed. Budin started his career as an assistant to Etienne Stephane Tarnier, another French obstetrician instrumental in the development for neonatal care. Infants that are born too early are often incapable of producing their own heat, and incubators help keep these babies warm and allow them to use their energy to grow and gain weight. Tarnier recognized this, and developed a crude isolette- a wooden box with a glass lid and a hot water bottle inside- to put premature infants inside of. Tarnier’s work contributed to a 28% decrease in infant mortality over three years at the French maternity hospital he worked in. Tarnier’s technology was picked up by a student of Budin’s, Martin Couney, who used considerably less conventional methods to help popularize special care for premature infants outside of France.
At the turn of the century, many hospitals in both America and Europe did not allow technology such as incubators to be used within their walls. Couney, however, recognized the potential of incubators for helping premature babies. Dr. Couney offered this type of treatment for premature infants free of charge; it was paid for through admissions. Dr. Couney displayed the babies in a sideshow at Coney Island starting in 1903, and charged onlookers twenty-five cents apiece to come in and view the babies and the technology keeping them alive. Similar sideshows were set up in Europe as parts of fairs and expositions, including the 1933 New York World’s Fair and the 1939 Chicago World’s Fair. Although the practice of displaying premature infants for money is certainly morally questionable, it helped pave the way for modern neonatal intensive care. Dr. Couney died in 1950, shortly after American hospitals began to use incubators to care for premature babies.
Formation of the Modern NICU (1950s-1970s)
Doctors and scientists began writing on the care of premature and sickly newborns as early as the seventeenth century; however, it was not until 300 years later that these babies began to receive special care in hospitals. Until the mid-twentieth century, most of these children were sent home without medical intervention; occasionally, they would have a nurse come home with them. It was not until after World War II that hospitals began to create Special Care Baby Units, the precursors to modern NICUs.
The creation of special care units for infants was sparked by the realization that heat, humidity and a steady supply of oxygen could increase the survival rates of sickly babies, meaning that hospitals could intervene to help babies live as opposed to just sending them home. Hospitals were initially reluctant to adopt incubators because of their cost, the fact that they limited access to the infants, and the lack of evidence of their effectiveness. Dr. Couney’s exhibitions brought awareness to the effectiveness of the incubator, which encouraged hospitals to adopt the technology. This was further encouraged by the invention of the Hess Incubator by Dr. Julian Hess at the Reese Hospital in Chicago; in addition to providing heat and humidity for babies, the Hess Incubator delivered oxygen to the infants. The following decade, incubators with clear plastic walls were introduced, allowing doctors and nurses to easily see and access the babies.
At this time, doctors were beginning to fully realize the danger that infection posed to newborns, especially premature babies. However, the way infection spread was severely misunderstood; it was thought that the biggest risk to a baby was another baby in the nursery. No one thought that a baby could get sick from a healthy adult. Dr. Louis Gluck was instrumental in proving this line of thought wrong. Along with Sumner Yaffe, Norman Kretchmer and Harold Simon, Gluck performed a series of experiments that involved two sets of babies; one washed daily, the other ones not. They would take cultures from both sets and compare them, and it became evident very quickly that the washed babies had fewer pathogens. To show that the children had a low risk of catching diseases from each other, Gluck began keeping the washed and unwashed children in the same nursery- at the time, keeping more than one premature infant in one room was considered a risky idea. This study included about 25,000 babies, and was never completed- the difference in the health between the two groups became so apparent that nurses began washing all of the babies regularly. It was shown that regardless of nursery mates, a baby who was washed regularly was much less likely to become ill than one who wasn’t; according to Gluck, there was “an 8 to 1 difference in acquisition of staph anyplace”. Gluck observed that the biggest issues was getting visitors and staff to wash their hands; to this day, this remains one of the biggest threats in the NICU.
After his research convinced him that infections were more likely to be caused by poor hand hygiene than by other infants, Gluck redesigned the special care nursery, and encouraged the use of isolettes and incubators all in one room as opposed to keeping babies sectioned off in isolated cubicles. This allowed doctors, nurses and other caretakers to easily access and tend to the babies. Gluck additionally designed the L/S ratio test, which determined the maturity of infant’s lungs and therefore their chances of developing certain respiratory diseases. Because of these accomplishments, Gluck is often hailed as the father of neonatology.
The Contemporary NICU and Family Involvement
Up until the 1970s, there was a very heavy emphasis on using machines to help at-risk neonates and very little on the involvement of the family. However, this began to change in the 70s. The Newborn Individualized Developmental Care and Assessment Program was developed by Heidelise Als, which encouraged family involvement and individualized plans for each baby. The program reduced the number of ventilator days required for children and improved the outcomes of graduates. In this same decade, fathers obtained “nonvisitor” status in the NICU, allowing them to stay with their children outside of normal visiting hours and increasing a father’s role in caring for his baby. The importance of the bond between mothers and babies was understood and maternal-infant bonding was also encouraged at this point. This became even more heavily emphasized in the next decade with the advent of kangaroo care- skin to skin contact between mother and child to promote bonding, stabilize the baby’s breathing, heart rate and body temperature, and help the baby gain weight and grow. Kangaroo care is now encouraged for all parents, regardless of sex.
Parental rooming-in- allowing parents to spend the night in the same room as their child- also was established in the 1980s, and older siblings became more involved in the care of babies; at this point, many hospitals established visiting policies for siblings. This allowed the whole family to help care for the baby and reduced the need for parents to look for childcare for their older children. Other family-centered resources were also established, such as support groups and antepartum consultations, helping families connect with other families who understand their struggles and helping prepare families for the difficulty of having a child in the NICU in the case of an at-risk pregnancy.
In the 1990s, the increase of technology to care for premature infants as well as an increase in professional knowledge about premature infants gave hope to babies who in previous decades may have been considered lost causes. Babies as young as twenty three weeks gestational age and as small as 500 grams- were successfully treated. Improvements in nutrition management and new technology allowing for precise fluid delivery, the maintenance of temperature and proper ventilation management all contributed to helping these very small infants survive. Care has continued to improve, and the survival rate for babies born at twenty-three weeks gestational age is now at 33%; babies born at twenty-four weeks have a survival rate of about 65%. Survival without any major health complications has also increased. These increases show hope for premature babies and their parents, and trends indicate that survival rates will rise even more in coming years. With increasing technology and awareness, survival for premature and sick infants is slowly turning from an exception into the standard.
"Babies On Display: When A Hospital Couldn't Save Them, A Sideshow Did." NPR. Accessed August 13, 2015.
Gluck, Louis. Interview by Gartner, Lawrence. February 21, 1997
Horn, Lucille. Interview by StoryCorps.
Fountain, Henry. "Louis Gluck, 73, Pediatrician Who Advanced Neonatal Care." The New York Times, December 15, 1997, Obituary sec. Accessed August 12, 2015. http://www.nytimes.com/1997/12/15/us/louis-gluck-73-pediatrician-who-advanced-neonatal-care.html.
Jorgensen, Anne M. "Born in the USA- the History of Neonatology in the United States: A Century of Caring." Accessed August 13, 2015. http://static.abbottnutrition.com/cms-prod/anhi.org/img/Nurse Currents NICU History June 2010.pdf.
Pearson, C. (2015, September 8). Survival Rates For Micro Preemies Continue To Improve. Accessed September 9, 2015. http://www.huffingtonpost.com/entry/survival-rates-for-micro-premies-continue-to-improve_55eed4fce4b093be51bbf26c
Yaffe, Sumner, Lawrence Adams, Duane Alexander, L. Joeseph Butterfield, Louis Gluck, George Little, Mildred Stahlman, Mitzi Duxbury, Carol Gartner, Lawrence Gartner, and Philip Sunshine. "Neonatal Intensive Care: A History of Excellence." Www.neonatology.org. October 7, 1985. Accessed September 3, 2015.
If you’re reading this blog, chances are your child was born prematurely. This article specifically deals with preemies that were not only born prematurely, but also continue to receive their nutrition by means of a feeding tube.
As a first message I would like to say that it is neither your fault that your child has a feeding tube nor has anything gone wrong in the treatment and taking care of your baby. However, the focus and attention of all the care offered has not been specifically directed at transitioning to oral feeds. We will be talking about why this would be an important step if the medical necessity for the tube has ceased to exist, how this can and should be organized, how you can help your infant catch up with it’s delayed or suppressed eating development and also how it can catch up to its current general developmental level without any medical risk.
When preterm babies should learn to eat without a feeding tube
Any infant born prematurely between the 23rd and 32nd gestational weeks should be discharged home from the neonatal intensive care unit (NICU) or the aftercare unit as an orally eating baby unless major ongoing medical complications require the feeding tube to stay in place for the time being. For preemies whose tube is no longer necessary to be able to successfully transition from tube to oral feeding, parents (under the guidance of their medical team) and the medical team themself will need to encourage oral function already on a non-nutritive level long before the infant is ready to accept any substantial oral feeding. If all goes well the whole transitioning process to full oral feeding should be completed at around the 34th gestational week. At this point the baby will probably weigh around 4.5-5.5 lbs. Latest, the preemie should be eating by the time of the formerly calculated term birthday. Medical studies have clearly shown that there are significant benefits to oral stimulation by finger or pacifier in preterm babies and that it is desirable to achieve oral feeding as soon as possible.
Which doctors are capable of releasing preterm babies without a feeding tube
As for instance in all institutions focused around the issues of self-regulation and sensitive individualized care, as is the case in most clinical centers following the guidelines and the recommendations of the NIDCAP® (neonatal individual developmental care assessment program), the ambition is explicitly to not discharge any infants - including preemies - on tube feeds. This goal is realistic and can be met by helping all preemies learn to suck and swallow in a self-regulated and coordinated manner so that they learn how the entire process works. Then, step by step and these children are guided towards being fully self sustaining by mouth and only then will the tube be removed.
Why releasing children without a feeding tube matters - The negative side effects of tube feeding
The work it takes by parents/doctors to help their child/little patient make this transition is well worth it, as oral fed infants suffer much less from the well known troubling negative side effects of feeding tubes.
In a recent study observing the largest population of tube-fed infants ever documented, the parents of 425 tube-fed infants (with both nasogastric (NG) and Percutaneous endoscopic gastrostomy (PEG) tubes) were asked to document their children’s reactions to their feeding tube. Nearly all of these children had been tube-fed since birth. The study showed that over 56% of these tube-fed children fight with gagging and retching episodes daily and 50% vomit frequently. As expected, depending on which tube the children had, their side effects varied. What’s astonishing though is that both tubes (nasogastric (NG) and percutaneous gastrostomy (PEG) tube) come with significant negative side effects and that no significant correlations could be found between age, sex, underlying medical diagnoses, type of feeding tube, feeding schedules (bolus or continuous), and parental and child’s behavior regarding the feeding situation and duration of tube feeding. This means that these side effects are endemic to the tube and unless the tube is removed, they will remain!
This is a serious problem, especially since f.e. frequent vomiting can lead to malnutrition. Recent statistics in this field show that more than 33% of all tube fed children aged 0-12 months are malnourished as defined by the criteria of the World Health Organization (WHO).
The fact of avoiding these typical tube related symptoms by early tube weaning in itself also sets lots of developmental energy free which the infant will then be able to invest into its general and motor development.
Now, what are some of the reasons why transitioning to oral feeds can be difficult or seem nearly impossible for your baby?
As a medical doctor, I’ve spent more than 30 years of my professional career working in and with NICU’s around the world. Examining and observing thousands of pre-term babies and their first attempts at eating, these are some of the most common challenges I’ve seen them struggle with:
Guidelines for what to do with a tube-fed preemie
Given that all of these challenges exist and are present in one child or another, it is very hard to give general recommendations. However, there are some guidelines which make sense for almost any situation where a preemie baby has been born and is fed with a feeding tube.
Elements to follow:
Find out if your medical team specifically wishes the tube feeding to be continued or gives your baby permission to transition to oral feeding. If you receive permission, start thinking about which medical organization you want to do the tube weaning with. Please, from the bottom of my heart, don’t try this alone on your own, it is potentially life-threatening for your child if you don’t know what you’re doing.
Since you’re not the first to go through this, I’ve asked a mother of a formerly tube-fed preemie to share with me how she went about choosing a medical partner for tube weaning her preemie. You can find her guide here.
Having helped wean hundreds of preemies from their feeding tube with my multi-disciplinary team at NoTube.com, these are some of the lessons I’ve learnt. Preemies are fighters and extremely tough. They’ve gone through so much to get to where they are and they will continue fighting! When challenged to learn how to eat orally by an experienced medical team advising parents what to do, preemies are well able to transit to oral feeding from and be fully orally sustaining by the 34th week or, in some cases, slightly earlier. During the tube weaning phase, a period of 2-4 weeks of slowed down weight development is normal and must be accepted. But it’s important to know that the task of tube weaning in prematurely born infants can only be achieved by intensive cooperation and trust between the nurses, doctors and parents!
I truly hope this article was helpful to you and would be glad to answer any comments here or to get in touch with me directly, just send me a message here!
Written by Marguerite Dunitz-Scheer, MD of notube.
When you hear someone mention the acronym NICU, what words come to mind?
Miracles? Sorrow? Triumph? Struggle? Heartbreak?
Six years ago I heard the torturous sound of an EKG flatline, as my son died surrounded by his family.
As is with my love, an ache in my heart still endures. And there are moments when I think of that NICU - the isolette, the tubes, the wires, and my tiny 5 pound baby and I still hear that sound. The sound that many...too many...parents hear every year.
But because, his heart stopped beating in the NICU, it is a place I will always hold sacred.
Our lifetime together.
Every memory, every dream, every hope I ever had, is housed in the NICU.
Here are five reasons why I still believe hope lives in the NICU:
1. Big things happen in the NICU
Dreams, both new and old, are achieved in the NICU. Every day, babies defy the odds, grow, and learn to thrive.
2. Your home away from home
The saying "home is where your heart is" truly applies. In the NICU, the word "family" is redefined. A community thrives here. Parents and medical professionals alike find new love, passions, and friendship.
3. Some of life's most treasured memories will be made in the NICU
Ask any parent of a baby that has spent time in the NICU, the NICU is a place where memories that last a lifetime are made.
4. Heroes don't wear capes
Heroism comes in many forms in the NICU- in the persistence and dedication of it's staff; in the spirit of the tiniest of patients; and in the unwavering love parents have for their children.
5. A place with a vital purpose
The NICU provides thousands of babies every year with the best chance at life, when those first moments in the world are the hardest.
The NICU will forever remain my son's only home. The place of his first's and last's. The space where every memory lives, including every kiss and every sweet embrace.
Our brief time in the NICU profoundly changed the course of my life - my career, my relationships, my philanthropic interests. More importantly, it showed me how love and hope endure, even in our darkest of hours.
Because he lived, the NICU will forever be a home for my hopes.
Written by Sarah King, President for Project Sweet Peas