In honor of World Prematurity Day, November 17, we are streaming thanks to the amazing caregivers who give so much for the most fragile among us. Thank you for all you do!!!
On November 17, 2014, the NEC Society will host its first annual “Thank a Caregiver” event in honor of World Prematurity Day. Families from all over the world are invited to submit a photo of someone from their child’s care team (ideally a photo that includes their child, too). During the week of November 17, the NEC Society will feature a slideshow of these caregivers on the NEC Society website, as well as Facebook and Twitter. The NEC Society will also email a digital certificate of thanks to each caregiver! Photo submissions can be completed here. All photo submissions must be received by Friday, November 14, 2014.
Please support the NEC Society by using Goodsearch! Sign up here to search the Internet with their Yahoo!-powered search engine (just like you’d search on any other search engine), and they will donate a penny for nearly all searches to the NEC Society. It adds up fast! Since 2005, Goodsearch has helped organizations like ours raise over $11 million.
Your account will also allow you to support us with their sister site, Goodshop. When you shop at your favorite stores through the Goodshop portal, the NEC Society will receive a portion of the purchase price! Goodshop also works with 5,000+ stores to provide great coupons.
We need funds to operate. Your Goodshop/Goodsearch dollars will allow us to:
Please sign up for Goodsearch today. Thank you!!
-The NEC Society Team
The NEC Society frequently shares stories of babies impacted by NEC; Clifford’s story is one.
We went into our 19 week ultrasound hoping to learn if our first child would be a boy or a girl, and we came out having learned that we may never meet our son. Despite a healthy pregnancy and no risk-factors, our son had a birth defect. He was diagnosed with an extremely rare abdominal lymphatic leak called congenital chylous ascites. Only a few prior cases in the world had ever been documented. His condition progressed to severe non-immune hydrops. Frequent in-utero interventions, including percutaneous fetal surgery, allowed us to maintain our pregnancy (despite pre-term labor) until 32 weeks.
When Clifford was born by emergency cesarean section, he needed immediate resuscitation, intubation, and surgical procedures. We began a very long Neonatal Intensive Care Unit (NICU) journey. He had a lot of surgeries, several life-threatening infections, countless blood transfusions, constant ventilation, and months with no food. For the first few months of his life, we were uncertain if we would ever take him home. Because his condition was so rare, there was no clear course for how to treat him. The neonatologists and pediatric surgeons at C.S. Mott Children’s Hospital began their research even before he was born. And while Clifford fought for his life in the NICU, his medical team kept brainstorming and trying different ways to help him.
Clifford’s lymphatic leak was eventually healed through a combination of surgery and medications. One drug, Octreotide, was heavily debated amongst his physicians. Its documented success in healing chyle leaks was inconsistent, and also posed the risk factor of developing necrotizing enterocolitis. It was eventually decided that Octreotide would be administered. It was one component, of many, that aided in Clifford’s chyle leaks eventually healing and finally being extubated at 3 months. However, as his medical team had cautioned, he developed necrotizing enterocolitis.
We were changing his diaper and noticed a small fleck of blood. We brought it to the attention of our nurse, who sent it to the lab, and paged the doctors. Our neonatologist ordered an abdominal X-ray, which confirmed her suspicion that he had necrotizing enterocolitis. Octreotide was pulled and all feeds were stopped. The necrotizing enterocolitis was caught so early that they were able to fully treat it with antibiotics and withholding food. Clifford was over 1 month gestational age when he developed necrotizing enterocolitis. The Octreotide was a necessary evil for him, and we fortunately had a medical team who acted very quickly when he presented with a symptom.
After 127 days in the NICU, Clifford finally came home. Over 3 months of pumping and freezing breastmilk while Clifford could not eat, combined with a lot of Kangaroo Care, allowed us to bring him home as an exclusively breastfed baby. We are forever thankful that extraordinary measures were taken to save Clifford’s life. He has grown into an incredibly healthy, happy, and bright boy.
A video of Clifford’s story can be viewed here.
You can read other babies’ stories on our NEC Stories page.
Ann Arbor, MI – With October being Infant Loss Awareness month, parents, clinicians, and researchers are launching the NEC Society, a non-profit dedicated to protecting babies from necrotizing enterocolitis (NEC). NEC is a leading cause of infant death, claiming the lives of about 500 babies every year in the U.S.
Two mothers who recently lost their babies to NEC spearhead the NEC Society. NEC is a life-threatening neonatal condition that causes the inflammation and death of intestinal tissue. Once diagnosed, many babies only live for a few hours or days, and survivors can have lifelong neurological and nutritional complications. Infant death due to NEC is more common than infant death due to influenza, allergies, car accidents, choking, and drop-side crib accidents combined. Yet, NEC rarely receives media attention and has never benefited from a compelling prevention campaign. Typically, families learn about NEC for the first time when their baby is already critically ill with the disease.
Jennifer Canvasser, founder of the NEC Society, explains, “My son Micah was critically ill when I first heard about NEC. In a matter of hours, Micah went from being a beautiful five-pound baby, to being critically ill and intubated, with cords, wires and tubes on each of his extremities. It happened so fast. During Micah’s downward spiral, I searched for resources related to NEC, but there was no organization committed to protecting infants from this disease.”
In addition to the approximately 500 infant deaths annually in the U.S., thousands more infants are impacted by NEC that results in extensive surgeries, lengthy hospitalizations and life-long complications. Despite medical advancements, the NEC mortality rate has not improved in over thirty years. The NEC Society believes the status quo is unacceptable. Research has shown that there are ways to help prevent this devastating disease, but lack of prioritization, funding and awareness have hindered meaningful progress.
The NEC Society seeks to close the gap between best practices and what is actually happening in neonatal intensive care units (NICUs) across the country. The NEC Society wants to see hospitals, policymakers, and the public prioritize this common, costly, and deadly neonatal disease.
Erin Umberger, a member of the NEC Society’s Board of Directors, describes her experience, “NEC stole my daughter’s life. The loss of a child is tragic and devastating. It is a lifelong loss. A piece of yourself dies along with your child. When I lost Sarah, I had to relearn how to breathe, eat, sleep and live without her in my arms. We must come together to stop this terrible disease.”
Members of the NEC Society’s Scientific Advisory Council are among the most experienced NEC clinicians and researchers in the world. Dr. Alexander Penn, a member of the NEC Society’s Scientific Advisory Board states, “The mechanisms underlying NEC are still incompletely understood. NEC is related to the immaturity of the intestinal tract and formula feeding significantly increases the risk of developing NEC in premature infants. Our own laboratory has shown that digested formula, but not digested fresh breast milk, is highly toxic to intestinal cells lacking the protection of a mucin barrier present in mature intestines. This only reinforces the existing literature stressing the importance of an exclusive human milk diet for premature infants.”
The NEC Society is bringing together internationally recognized NEC researchers and clinicians, mobilizing NEC activists around the world, and striving to empower families of fragile infants who are at risk of being impacted by NEC. Already, the NEC Society has launched a groundbreaking international survey of families impacted by NEC to identify gaps in knowledge and communication about the disease. The NEC Society is also embarking on a campaign that will urge NICUs to ensure that all fragile infants have access to breast milk, as breast milk protects fragile infants from NEC.
While we cannot eliminate the risk of NEC, we absolutely can – and must – reduce the risks by implementing a range of preventative and protective measures. Hundreds of U.S. families lose their babies to NEC every year. The NEC Society will not stop fighting until fragile infants are best protected from necrotizing enterocolitis.
Contact: Jennifer Canvasser, MicahBabySmiles@gmail.com 408-264-4984
The NEC Society is at the Preemie Parent Alliance Summit in Phoenix, Arizona this weekend. We just heard a great talk from Dr. Alan Spitzer with MEDNAX/Pediatrix Medical Group on “Big Data in the NICU”. Their network of NICUs cares for over 20% of the nation’s NICU patients. By maintaining and analyzing the nation’s largest database of information on patient treatments and outcomes, they have developed toolkits and protocols for treating various conditions. Since implementing these protocols, they have seen dramatic improvements in outcomes. For example, they have reduced the incidence of NEC in their network NICUs by over 40%! They also make their database available to researchers and clinicians for further study. Go big data!
We are ready and excited to get to know all the other amazing organizations working on behalf of preemies and their families! Watch this space for updates as the weekend goes on. Learn more about the Summit here.
The NEC Society is non-profit, 501c3 organization dedicated to reducing the incidence of necrotizing enterocolitis (NEC) by bringing together NEC families, researchers, and clinicians, with community stakeholders, legislators, as well as other individuals and businesses, concerned about infant health. Behind the NEC Society are thousands of families from … Continue reading
No one plans to become a parent of a fragile infant. When a baby is born prematurely, most parents are woefully unprepared for the journey through the Neonatal Intensive Care Unit (NICU). Infants in the NICU are often so fragile that they cannot be held, fed, dressed or bathed. Parents often feel disempowered and helpless.
Throughout my pregnancy, I took excellent care of myself and did everything right, but suddenly found myself in preterm labor. When my twin boys, Micah and Zachary, were born three months prematurely, I didn’t know how to be their mommy. We were often physically separated from each other. During my time with them, I was terrified of hurting their tiny bodies. I didn’t understand the NICU language. I didn’t understand the wires, machines, alarms or numbers. I had to stand back and let others take care of my newborn twins. I could not protect them from the pokes, prods and emotional distress they endured. Needless to say, I was a mess.
Zachary was hospitalized for 91 days. Micah developed necrotizing enterocolitis (NEC), a life-threatening intestinal disease, and remained hospitalized for 299 days. By the time both of my twins were at home, I knew things that I only wish I had known from day one in the NICU.
1. You are an integral part of your preemie’s care team. Your thoughts, feelings and observations are critically important. Speak up, respectfully. Ask questions. Voice your concerns. Share what is important to you. If you feel strongly that something is in the best interest of your baby, insist on it being that way.
2. Preemies need fresh breast milk. Preemies should receive a 100% breast milk diet. Fresh breast milk can be life-saving for fragile infants. Mothers should begin pumping as soon as possible. To establish and sustain her milk supply, every mother of a preemie needs support from her partner, family, lactation consultant, and baby’s care team. When mothers’ own milk is unavailable for fragile infants, pasteurized donor breast milk is the next best option. Formula increases a preemie’s risk of developing NEC.
3. You know your preemie best. Learn your baby’s cues. Premature babies can become critically ill fast. You may know before anyone else when something just doesn’t seem right. If you sense something isn’t quite right, voice your concerns and make sure they are addressed. Watch for these subtle signs that something may be wrong:
4. Insist on having primary caregivers. A team of primary nurses who know your baby and family will help to ensure better communication and continuity of care, which increases patient safety. Take time to build a respectful, trusting relationship with your baby’s primary caregivers.
5. Learn how to care for your preemie. Ask your baby’s nurse to teach you how to provide basic care for your preemie. Provide kangaroo care as often as you can. Preemies need to feel their parents’ touch. When you cannot kangaroo your baby, hold hands and read to him/her.
6. Pay attention to details. Keep a journal documenting your baby’s care routines, behavior, as well as his/her setbacks and accomplishments. Capture your thoughts and questions. Take notes during rounds. Do not assume the care team knows everything and will do everything right. They are human and make mistakes. If you don’t notice the mistakes, it’s possible that no one else will.
7. Become your preemie’s expert. Read and learn everything you need to know about your preemie’s health or condition. Learn the NICU language and best practices. If you’re not sure where to find credible information, ask your baby’s care team. Reach out to other NICU families. Reach out to other institutions, neonatologists or researchers if you have specific questions that your baby’s care team cannot address.
8. You are your baby’s voice. Attend rounds. Do not let anyone intimidate or shame you for being your baby’s advocate. You are not annoying. You are not stupid. You are not going to jeopardize your baby’s care. Your baby needs you to speak up for him/her, respectfully.
9. Create a haven of peace and healing. Leave behind your frustrations and fears so that you can be present and tune into your baby. Make your preemie’s space your home away from home. Smile at your baby. Sing to your baby. Bring in special blankets. Hang up family photos. Play soothing music. Celebrate the smallest of milestones.
10. Live your life fully. Having a baby in the NICU is exhausting and overwhelming. The NICU journey may feel like it’s never going to end, but it will be over soon. For better or worse, you’ll never have this time back. Live it fully, without regrets. Make hand and footprints. Read special books to your baby. Take pictures and videos with your baby, even if s/he is critically ill. Savor this time with your baby.
Tragically, baby loss is a real thing for many NICU families. If you’ve experienced this tragic loss, seek the support of the baby loss community. If you know a family who has lost a baby, check out this list: 6 Things to Never Say to a Bereaved Parent.
Parents of preemies need support from their family and community. If you know a family with a baby in the NICU, insist on showing them some love. A community of love and support will help parents be the best advocates, nurturers and champions for their precious little ones.
It was an uneventful pregnancy. I had a little more stress than usual, but nothing I couldn’t handle. The delivery was uneventful as well. A scheduled C-section at 39 weeks. She came out crying and we took her home after two days. Something just didn’t seem right, though. She was unable to hold down breast milk, so the pediatrician and I decided she must be lactose intolerant like her sister was, so we swapped her to formula after two weeks. At 3 ½ weeks, she still hadn’t made any progress, so I took her in to discuss another formula change. Once at the Pedi, they discovered she was running a 100.4 fever. Just enough to send us over to the local ER for a workup.
Once in the ER they ran their routine test and discovered something going on inside of her little belly. We were flown to Children’s Medical Center in Dallas and the roller coaster began. Once there, the doctors uttered the words Necrotizing Enterocolitis, or NEC. It was all a blur, nothing made sense.
Weren’t we just home all snuggled in bed?
NEC, typically affects premature infants, but there are rare cases like Brentlee’s when the disease affects full-term infants. The NEC that affects full-term infants appears to be of a different etiology than the NEC that affects preemies.
Brentlee required surgery to remove some of her bowel that died, and we spent 98 days in the NICU, which was the most scary, humbling roller-coaster ride we had ever been on. Unfortunately, NEC claims the lives of nearly 500 U.S. infants each year, but we were lucky enough to keep our little angel. NEC was just the beginning of our long journey. Once in the NICU she also contracted enterobacter and klebsiella through her central line, staph, rhinovirus, and she developed a blood clot in one of her main veins. She was unable to absorb the nutrition she needed, so she had to have a feeding tube.
What should have been the most awful, miserable 3 months, ended up being the most humbling experience of our lives. Through all of the set-backs and discouragement we found light in her smile. She never gave up, no matter the circumstance, so we never did either. Brentlee is the strongest, most courageous little girl I have ever met. Most people wait a lifetime to meet their hero, and I gave birth to mine.