By: Elizabeth Payne
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Dr. Vincent Smith has practiced neonatal and perinatal medicine at Beth Israel Deaconess Medical Center in Boston for over ten years. Dr. Smith is a big proponent of family-centered care, an approach that encourages heavily involving the families of NICU patients in the care of their babies.

We had the pleasure of speaking with him recently on the value of family-centered care.

Tell me about your experience with family-centered care models.

Dr. Smith explained that one of the big advantages of family-centered care was having extra sets of eyes on each patient, watching just that patient.

Families, he said, “are getting a PhD in their baby”.

They oftentimes notice changes, both positive and negative, before the staff, and are able to notify their child’s providers about any such changes.

“Moms are the first to know,” he noted with a smile.

One of the ways he has tried to encourage family-centered care is having parents go on rounds with providers, making them a part of the healthcare team instead of an extension of the patient- this has resulted in a higher satisfaction rate among families.

​Family-centered care encourages parent/child bonding, and gives the parents more understanding of what is going on and gives them some degree of control during a confusing, tumultuous time. With support and understanding of what is happening, parents become more confident in caring for their child.

"It’s a beautiful thing when people stop being scared and start enjoying their baby,” Dr. Smith said.

Noah Matthew was born on a rainy winter day in 2009, Pearl Harbor Day to be exact. We jokingly surmise that it was Noah’s way of warning us that it would most definitely be, ‘a day that would live in infamy’ for more reasons than one. My pregnancy and Noah’s birth were not like many others of his preemie friends.

I, of course, did what any neurotic first-time mother does, including making a playlist of songs I would like playing in the delivery room, putting headphones on my tummy with Mozart blasting to aid his brain development, reading every single pregnancy book, and anxiously awaiting the arrival of our first child. Our plans took a tailspin at the end of October 2009 when I contracted the deadly H1N1 flu (swine flu) at 24 weeks pregnant.

After a very unfortunate initial misdiagnosis at a local urgent care facility only a couple days after the onset of symptoms, I entered the hospital emergency room, and, unbeknownst to me, was already in very critical condition. After being rushed back to triage and following a flurry of activity that included multiple IV lines, a breathing mask, and several medications, my vitals continued to decline. The doctors instructed my husband and me that it was in my and our baby’s best interest to be placed in a medically induced coma for a couple days to allow my body to get some rest and not work so hard to breathe.
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A couple days turned into weeks, and I woke up almost two months later as a new mom to a very tiny preemie baby. Over the course of six weeks, I was on a ventilator, got a massive blot clot, went into renal failure, and eventually had to have a tracheotomy placed to help me breathe on my own. As I began to wake up from being weaned from the paralytics, Noah started experiencing heart decelerations, and the decision was made to deliver him via emergency C-section at 29 weeks and five days gestation. I regained full consciousness the evening following his birth. With the help of my husband  and our nurses (and with my arms being propped up on pillows because my body was so atrophied from lack of movement for almost two months), I was able to ‘hold’ my son. That was and always will be one of the best moments  of my life.

Noah spent the next three months in the NICU, dealing with issues ranging from a close call with NEC (necrotizing enterocolitis), lung and breathing issues requiring extreme oxygen support, Gastroesophageal reflux disease (GERD), ROP (retinopathy of prematurity), growth issues, anemia, which required several transfusions, as well as hernia repair surgery in his umbilical and groin areas.  In comparison, our journey in the NICU was, for the most part, uneventful when you think about everything Noah endured while in utero. He was exposed to drugs that could have made it impossible to survive, or at the very least cause brain damage. I never thought there would come a day when I would ever say that I was thankful I went into complete renal failure, but I am because my blood was being cycled out of my body and scrubbed clean 24 hours a day, seven days a week. Because of this, Noah received only very residual amounts of those toxic drugs.

The post-traumatic stress I experienced in dealing with my own mortality and subsequent paralysis in my right foot, made things that much more stressful  and still stays with me in some ways today. I had to struggle with the notion that I was no longer this strong, independent, capable person I had been before. Instead, I counted my blessing as I sat in a wheelchair beside my  son’s incubator. And again when I held onto a walker to be able to watch  my husband change my little two-pound son’s diaper.
How would I ever be able to take care of this fragile human being who depended on me for his life when I could barely take care of myself? You  sit there in a room with beeping monitors and flashing numbers on a screen  that act as a constant reminder that your tiny little baby is not like all the others. One of the most difficult things in the NICU is seeing other babies  and their parents who got there after you did leave before you. I can’t tell you how many times I looked over at my husband and thought, “Why not us?”

Our chance of survival was less than 10 percent, but we were able to defy the odds. With the help of modern medicine, through many prayers, and by the grace of God, we became miracles. To say that I have learned to look at life and tough situations very differently would be an understatement. Despite all the anxiety,  fear, and sadness, we experienced the most special and rewarding memories.
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The relationships and bonds we made with the nurses, doctors, and fellow NICU parents are as strong as they were all those years ago. We don’t take things like our health and waking up every day for granted anymore. We know, beyond the shadow of doubt, that the miracle of birthing a healthy child is a blessing. And most of all, we are so very thankful for all the nurses and doctors and organizations like Miracle Babies who were there for us during one of the scariest times of our lives.

If there is a support group you can join, or a way you can give back to those in the shoes you filled not so long ago, I encourage you to reach out and do something. Miracle Babies has afforded us opportunities to do just that. There is no way to be able to say thank you enough. We are forever indebted to them and the wonderful life they breathe into this community and this family of NICU warriors.

Veronica Pacheco

​Abstract taken from “Miracle Babies guide and journey though the NICU.”
Written by: Sean Daneshmand, MD and Susan Newman, MSN, RN, NNP-BC

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About the Author:
​Heather S. is the Mom of three miracle triplet’s Savannah, Max and Lillyana.  They were born at 28 weeks 1 day and spent over three months in the NICU.  Her son was transferred to AI Dupont Hospital For Children’s NICU at just 13 days of age where he received several life saving surgeries.  Her triplet’s just turned 4 years old in August.

Heather has been generously giving back by volunteering with Precious Kisses, a division of Project Sweet Peas based in the Philadelphia area.  She and her family, friends, colleagues and school students have be helping support families with babies in the NICU at Nemours Alfred I. duPont Hospital for Children.  She strongly believes that helping others promotes healing.  ​

Having a child in the NICU is a stressful situation. Here are some ways you can cope with this stress.

Take care of yourself: You can’t take care of someone else if you don’t care for yourself first.

Build a support system: It may be difficult to feel connected to family and friends if they have never had a baby in the NICU. It is important for you to find people who can relate to you and this unique experience that you are going through. Check with your hospital to see if they have a NICU support group for parents. If a support group is not offered at the hospital try to find an online support group so you have people to talk to who understand what you are going through.

Get Sleep: This seems pretty basic, but sometimes it is hard to do when you are worried about your child. Make sure to try and get 6-8 hours of sleep per night because sleep is important to help your body and mid recharge.

Exercise: Exercise is a wonderful stress relief and is super important to your overall health. Make sure you ask your doctor what types of exercise you can do if you have just had your child because there may be some restrictions.

Eat Healthy Foods: When you are traveling back and forth to the NICU it may seem hard to eat healthy, but eating healthy will make you feel better. Pack healthy snacks (like fruit, granola bars, and packets of oatmeal) that you can eat easily while at the hospital.

Accept help: If people offer you help, take them up on the offer. Websites like mealtrain.com and lotsahelpinghands.com can be great at keeping all the people who want to provide you help organized. Ask people to do laundry, take you to the hospital, make meals, or even care for older siblings while you focus on caring for yourself and your new child.

Journal: Being able to expressing your feelings on paper can help you cope with them. The journal can also help remind you of what your baby has accomplished and how far they have come since being born.

Relax: Spend time away from the NICU doing things that you enjoy, such as taking a walk, going out for dinner, reading a book, meditating etc. You may feel bad if you don’t spend every moment with your child, but they are being well cared for at the hospital. It is important that you take time for yourself to try to relax.
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Therapy: If you are feeling overwhelmed you may want to seek professional help. A therapist can help you understand everything that you are going through and help you to understand your feelings. A huge benefit therapy is that its effects are long-lasting. It allows you to work through problems and develop the tools you need to help you deal with issues in the future.

"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.

Written by:
Meghan Hall
CEO/Founder Avery's Angels ® Gastroschisis Foundation 
​www.averysangels.org

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.

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” [1].

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.