Archive for the ‘NICU’ Category

85 days early

Wednesday, June 19th, 2013

Clair and Reese

By Maggie Sonnek

Chadley Doering had been at work 10 minutes when got the terrifying call every dad-to-be fears. His pregnant wife, voice shaking, said only eight words.

“You need to take me to the hospital,” she said.

At 22 weeks pregnant, she was bleeding.

Mother Nature had packed a punch that February morning. Ice-covered roads and bitter cold wind gusts made the 10-mile drive to the hospital seem eternal. To make matters worse, Mary Kay Doering started having contractions. She was going into labor.

The staff at the hospital near the Doerings’ home in Silver Lake was as prepared as they could be. One nurse’s words devastated the couple.

“There’s nothing more we can do for you here. We’re sending you to The Mother Baby Center,” she said.

Paralyzed with fear, the 26-year-old was prepped for the hour-long ambulance ride to Minneapolis. And she would be making the journey alone, leaving her husband to brave the winter storm on his own.

Just 16 weeks earlier on a crisp fall day, Doering found herself alone again, this time with a smile on her face. She had just learned she was carrying twins.

But now, as she bumped along in the screaming ambulance, she could only hope and pray her babies would hang on.

When she arrived in Minneapolis, doctors and nurses surrounded Doering. She was dilated to three centimeters; just a breath away from active labor.

They were able to stop her contractions, but gave her one assignment: Stay pregnant. Doering would be confined to a bed at The Mother Baby Center for the next 14 weeks.

Through it all, husband and dad-to-be worked hard to make sure Doering felt connected to her life at home, even though she was lying in a hospital room nearly an hour away. He painted the nursery purple – the couple learned they were expecting two girls – and filmed it so she could witness each brush stroke.

On March 25, Doering, at 27 weeks and six days, felt uncomfortable. In pain. She knew the babies were coming. Her husband knew it, too. But he was at home, 60 miles away, and his car could only carry him so fast.

“For a couple minutes, I was upset,” Doering said. “But I soon realized that these babies were coming whether Chadley was there or not. Waiting just wasn’t an option.”

Doering was rushed into surgery and the babies were delivered via caesarean section one minute apart. Dad missed the birth by 20 minutes.

Devastated, he arrived just as the girls were getting adjusted to their new homes at the Neonatal Intensive Care Unit at Children’s Hospitals and Clinics of Minnesota (NICU) in Minneapolis.

A million thoughts rushed into his mind as he saw his babies for the first time. He slowly made his way to their isolettes and cautiously stuck a finger into their plastic box.

The girls, who weighed no more than a can of soup, gently tugged back. Although they were 85 days early, they still recognized their daddy.

Clair and Reese made their home in the NICU for the next 35 days before they were transferred to a hospital closer to Silver Lake.

During these long days surrounded by monitors and nurses and feeding tubes, mom and dad tried to keep things as normal as possible. But, even daily visits and email updates couldn’t take away the feeling that something precious had been stolen from them.

“The time in the hospital and NICU was nearly impossible. I wouldn’t wish it upon my worst enemy,” she said. “And yet I would do it all again in a heartbeat.”

On Sunday, May 19, one month before their actual due date, the Doerings got the news they’d been waiting for. The girls were finally able to go home. No breathing tubes, no isolettes, no monitors.

They could finally sleep in their purple-painted nursery.

“Being a mom puts everything into perspective,” Doering said. “It’s an incredible feeling to be a parent.”

This post originally appeared on the Great Beginnings blog.

Posted in Family Stories, NICU, The Mother Baby Center | No Comments »

How kangaroo care came to the United States: One mom’s journey

Wednesday, May 15th, 2013

Chris Clark was 23 weeks pregnant, on bed rest after her water broke, and had been given little hope of having a viable pregnancy.

A mom of three kids already and a natural protector, she wondered, if her child was born, was there something she could do to enhance his chance of survival? Bed rest gave Clark, who had a background in respiratory therapy, time to research.

She landed on an article in the magazine, Mothering, about kangaroo care in Colombia. Kangaroo care is the practice of holding your newborn baby skin to skin, which provides benefits to both the parents and the child. It helps premature babies develop. At the time – 1989 – kangaroo care wasn’t being practiced in the United States.

“I read the article through and thought, ‘Oh, my gosh, they’re holding babies skin to skin and the babies are doing better,’” she said. She contacted a researcher listed in the article, shared her condition with her and asked for medical literature supporting kangaroo care. The researcher sent the information overnight – she doubted Clark had much time before delivering.

Hours after getting the literature, Clark was rushed to United Hospital where she gave birth to Danny, who arrived at just 29 weeks on May 7, 1989. He was taken to the neonatal intensive care unit (NICU) at Children’s Hospitals and Clinics of Minnesota in St. Paul.

Danny, born on May 7, 1989

As soon as Danny was born, Clark started asking the neonatologist, Dr. Mark Mammel, if she could try kangaroo care.

“I was interested and also cautious. Maybe it’s growing up in the ’60s, but it seemed like a good idea. Parents holding babies – rocket science? No. But we all worried about the issue of temperature control, monitoring, airway obstruction, and so on,” Mammel said.

Clark persisted. “I asked every day if we could please, please try it,” she said.

Five days after giving birth on Mother’s Day, Clark held Danny for the first time. There were two crash carts and two resuscitation teams nearby – ready in case anything went wrong, she said.

“It was crazy. (Some of the staff) appeared terrified,” she said.

But the minute Clark started holding her son, terror and fear disappeared. She found only comfort and connection.

“It made me feel like his mom,” she said. “It was like I was in my own world with him.”

“Chris was very smart about the process. She initially saw the technique mentioned in a magazine…which I was familiar with as a fringe publication. It was not a great source for me to rely upon. Chris knew this!” Mammel said. “She gathered the actual medical literature – though there wasn’t much – and brought it to me and the group to review. Like all change in a NICU setting, a champion is needed to bring others along. I liked what I read – kangaroo care looked safe and probably beneficial, as well. So I became that champion, working with my partners and the nursing staff to pave the way for Chris to be the first.”

Clark holds Danny skin to skin

Initially, Clark spent about 30 minutes twice a day using kangaroo care.

Danny ultimately spent about nine weeks at Children’s. During that time, he needed nine blood transfusions, experienced numerous spells where he stopped breathing, and early on required a ventilator and 100 percent oxygen.

Prior to leaving, Danny required hernia surgery. Clark held her son for about 24 hours before the operation.  The anesthesiologist visited afterwards to tell her Danny was the “most relaxed baby” he had worked with in his years of surgery.

Danny just turned 24. He’s run a marathon, has no lung or sight problems and is a singer/songwriter, Clark said.

“I believe Danny is who he is because of kangaroo care,” she said.

Kangaroo care is now a standard practice at Children’s and beyond.

“I’m a fairly strong advocate and a fighter for what I think is best for my kids. The fact that it has helped other kids feels like this might be the purpose of my life and, It’s enough,” Clark said. “I was blessed to have enough people that believed in and supported us.”

Today marks International Kangaroo Care Awareness Day – a day we celebrate at Children’s.

“We had always seen ourselves as ‘family-friendly’ – trying kangaroo care was a way for us to really walk the walk. We became recognized around the country for this, though it was never a focus of our research efforts. Others took on that task,” Mammel said. “Today, all our families benefit from this practice, which is as routine as turning on the lights in the morning.”

Posted in NICU, Patient Stories | 5 Comments »

Mason’s story: How to cope when your sibling is the patient

Tuesday, April 16th, 2013

By Mason Stoltz

My brothers and I were not expecting to be without a mom and dad for 99 days. But that’s sort of what it felt like when my sister was born extremely prematurely. Suddenly, our world was turned upside down and we had to take on a lot more responsibility than we were used to. When my parents weren’t at work or asleep, they were at Children’s. So, as you can imagine, it dramatically changed things for the three of us kids who were at home.

Mason holds his sister, Katie, for the first time.

Here are some of the ways we learned to cope with our “new normal”:

  • My older brother met with a counselor at school. This gave him someone to talk to at school who really knew what was going on in our family. This person was able to offer suggestions on how to deal with stress and still stay on top of things at school.
  • We read books as a family that helped us all to understand what was going on in the neonatal intensive care unit (NICU) where my sister was and a little bit more about the challenges she was facing.
  • We visited Children’s often and took advantage of the awesome services that are designed for siblings and family members. For example, did you know there is a Sibling Play Area at the Minneapolis location loaded with fun toys and activities for siblings to play with? It is open to siblings of a Children’s hospital or clinic patient, ages 2 years and up.  Siblings can be checked in for up to 1 ½ hours, twice a day. The staff there was super nice and had really great activities and crafts for us to do.
  • We would make things for my sister.  All patients at Children’s have their own private room and it is meant to be their “home away from home.” We had a lot of fun drawing pictures and making get well posters that we could hang in my sister’s room. I hope it cheered her up and let her know we loved her. I think the nurses and doctors were able to get a better insight into our family by personalizing her space a bit.
  • During my sister’s hospitalization, we had a plastic box at our house that we pretended was an isolette (like the one my sister was in at the NICU). My 4-year-old brother liked to pretend he was a doctor and took care of his teddy-bear patient, the way the doctors and nurses were taking care of my sister. If you want more ideas about how to creatively and simply teach kids about the complex issues and procedures that happen at a hospital, talk to a Child Life Specialist. They are a wealth of information and some of the most valuable people at the hospital, in my opinion!
  • I liked having my own picture album of my sister that I could show to my teachers and friends. It almost became a morning ritual in my classroom for me to share the latest developments with my sister. It felt nice to be able to educate my friends about her situation and I felt their support as a result.

I hope these suggestions might come in handy for you if you have a sibling in the hospital. Just remember, even though your sibling might look different in the hospital, they are really the same person.The more you can do to still interact with them the way you would if they were at home, the more comfortable you both will feel. Many times you can still play a game, watch a favorite show, share jokes over the phone, make paper airplanes, do a craft, celebrate a birthday, and make a memory even while they are going through something difficult. You can be a part of their prescription back to health.

Mason, 13, is a member of our Youth Advisory Council. 

Posted in NICU, Patient Stories, Youth Advisory Council | 2 Comments »

Five Question Friday: Sheralee Leonard

Friday, April 12th, 2013

Meet Sheralee Leonard, one of our social workers at Children’s Hospitals and Clinics of Minnesota.

Sheralee Leonard

What does a typical day look like for you? Being one of the social workers in the neonatal intensive care unit (NICU) on the St. Paul campus, my daily routine includes meeting with parents and extended family members of medically fragile and sick infants. I provide ongoing support while the baby remains hospitalized.

We often talk about ways they are making connections with their infant and how they are feeling about the experience, as attachment can be more difficult with a baby who is in an isolette, connected to wires, and may not be able to be held or tolerate much stimulation. I also listen to the families tell their stories and explore ways for them to cope in a healthy and healing manner.

Assessment for postpartum depression is also crucial in the NICU. Mothers and those they are getting support from are both educated on the risks and symptoms of postpartum, and I check in with mothers regularly on how they are coping.

Families can often have unexpected financial stressors related to needing to be away from work so they can be here at the hospital. I help families to connect with various community programs that may be able to assist them in getting baby items, or help with a rent or mortgage payment.

Considering no one day is like the other in the NICU, there are many other aspects to my job. Child protection reports are made when a baby tests positive for a reportable drug.  Behavior contracts are made and discussed with family members when unsafe behavior occurs in the hospital. This is in collaboration with security and our NICU nurse manager. I also provide grief support to families, related to their hopes and dreams for their baby which may be altered because of a medical diagnosis affecting their child’s long term functioning.  I also support families when their baby dies.

And not to underestimate the value of team, I am collaborating and communicating with the various members of the healthcare team in the NICU. We work closely together on ways to help support these families. Without the many caring and dedicated staff in the NICU, families would not be able to get the family-centered care and respect that is seen in the NICU.

What drew you to Children’s? My first experience working in a hospital was at United Hospital as a weekend/on-call social worker.  At that time, United Hospital provided on-call and weekend coverage to Children’s as well. I soon discovered how much I loved the work at Children’s, and whenever a referral came up at Children’s, I offered to take it. The connections with families, the diversity of the types of work I could do, and the collaborative relationship between the different disciplines in the hospital all drew me to Children’s.  Soon I was able to work there full time, and I haven’t left.

What do you enjoy most about working here? I truly feel honored to be allowed to accompany and offer emotional support to families going through a difficult experience related to their baby’s health.  The compassion I have seen from families, and the extent of caring from members of the NICU healthcare team, has touched my heart and soul.

What do you think makes kids great? Children are amazing! They are so intuitive and honest in their perceptions. Children possess such strength, and given a nurturing environment can flourish and get through some very stressful and difficult situations. I have been very impressed by the children and families I have worked with here at the hospital, learning more about the aspects of hope, healing and the desire for a better life.

If you could travel anywhere in the world, where would it be and why? When I was younger I traveled to Europe. I think it would be great to return. It would be fun to be among the beauty of the mountains in Switzerland, enjoy the city life in Paris, and be able to get on a train and travel to new places.

Do you have a recommendation for a Children’s employee who should be featured on Five Question Friday? Send your suggestions to Brady at Brady.Gervais@ChildrensMN.org.

Posted in Five Question Friday, NICU | 2 Comments »

Why I march for babies

Tuesday, April 9th, 2013

By Jana Cinnamon

I vividly remember the first time I held Sadie. She felt like she weighed no more than the purple blanket she was wrapped up in. It wasn’t at all what I imagined it would be like to hold my baby for the first time.

We sat together in a rocking chair. I was nervous to move, afraid that any movement I might make would trigger an alarm from one of her monitors. After some time, I bravely leaned down to kiss her little head and then I started to sing quietly to her.

“You are my sunshine, my only sunshine.
You make me happy, when skies are gray.
You’ll never know dear, how much I love you.
Please don’t take my sunshine away.”

With tears in my eyes and a lump in my throat, the last line of the song became my cry out to God. Please Lord – do not take her away from me.

Sadie’s early arrival was a complete shock to my husband and me. We were readying ourselves to become parents, but nothing could have prepared us for becoming parents to a preemie. Sadie’s first seven weeks on this earth were spent in the neonatal intensive care unit (NICU) at Children’s Hospitals and Clinics of Minnesota. I remember walking the halls, seeing pictures and reading stories of other babies that had been born early. There were tremendous success stories of babies that had been born decades ago at a time when the survival rates of premature and low-birth weight babies like Sadie was not nearly what it is today.

Sadie

Although I still had uncertainty about Sadie’s future, reading those stories gave me an overwhelming feeling of gratefulness. I became thankful for the advances in medicine and the access we have to superior health care. I became thankful that Sadie’s prematurity and small size was not the end of her story. And I became thankful for the work of the March of Dimes.

Prior to Sadie’s birth, I had heard of the March of Dimes, but was not familiar with their mission or work. Since I became a mom to a miracle, I have learned a lot from the March of Dimes. Most of all, I learned I was not alone. In the United States, one in nine babies is born prematurely.  Yes, there can be comfort in numbers, but this is not a comforting statistic. The March of Dimes is actively working to reduce the number of premature births in the United States. Additionally, they are funding lifesaving research to support healthier babies.

Today, Sadie is five years old and has no lasting effects from her premature birth.

This spring, my family, friends and I will be walking in the March for Babies. This event is a major fundraiser for the March of Dimes and this year, in particular, is exciting as they celebrate their 75th anniversary. Participating in this event has brought me hope and healing. My favorite part of the walk is the last mile – “Mission Mile” – where signs are posted along the street featuring babies that entered this world too early.

My daughter, born 10 weeks too soon and weighing 1 pound, 9 ounces, is a fighter. She has inspired me to fight for healthier babies. Will you walk with me?

Find more information at www.marchforbabies.org. Children’s is proud to sponsor the Twin Cities March for Babies Walk on April 28.

Posted in Community Events, NICU | No Comments »

Patient to patient: How to manage school work when you’re hospitalized

Tuesday, March 12th, 2013

Olivia, Youth Advisory Council member

By Olivia

I’ve been a patient at Children’s my entire life (17 years). I’m also on the Youth Advisory Council (YAC) at Children’s Hospitals and Clinics of Minnesota. This is my eighth year as a part of that. YAC is a group of kids and teens who are either patients at Children’s or family to patients here. Our job is to make the hospital a better place to stay and to heal. Because of our experiences, we all understand that the hospital is not where anyone wants to spend their time, but we try to make it a little better and more comfortable.

I was born early at 29 weeks and suffered from brain bleeds at birth. This caused me to develop a condition called Hydrocephalus, which is also known as water on the brain. Hydrocephalus affects everyone differently. It mainly causes headaches, but the headaches are caused by pressure in the brain, which, if not corrected can lead to brain damage.

Because of this diagnosis, I’ve had to undergo over 70, yes 7-0 brain surgeries (all at Children’s) to attempt to fix or at least help the complications from the condition. There’s currently no known cause for Hydrocephalus, but the primary treatment is the placement of a shunt. A shunt is basically tubing that is placed in the brain, which drains the fluid from the brain to the stomach area, which relieves pressure and makes the headaches less painful. With Hydrocephalus, you’re basically looking for a happy medium of pressure (not too high or too low) all the time. With more than 70 surgeries in just over 17 years, that amounts to a lot of time in the hospital.

As a veteran patient and a member of YAC, my job is to try to help kids who are or have been in the hospital. By writing this blog post, I hope to help with something other than just “getting better” or “enjoying your stay.” I want to address something that is very important and also very difficult: Keeping up with school when you’re absent because of health issues. Whether that’s because you’re an inpatient or just don’t feel good enough to be at school, staying caught up can be so hard. I’m a junior in high school, so I’ll mainly address high school students. But my advice applies to those in elementary and middle school.

Be proactive: If you know you won’t be in school, talk to your teachers ahead of time. ALWAYS keep teachers updated, even if it’s just a quick email about little stuff. They’ll be much more willing to work with you if they’re kept in the loop. Let them know what’s going on, why you can’t be in school, and when you think you’ll be returning to school. Share as much as you’re comfortable with.

Plan ahead – if you can: Depending on how serious your medical situation may be, you may not be able to do homework while in the hospital. If you know that’s the case, make sure to plan for that and make a plan for when you will do the work. Having your teacher help you create a plan may also be helpful – for both of you.

Talk to your classmates: If you know friends are in your classes, they can gather homework for you and even tutor you if needed. That way, when you return you kind of know what’s going on.  This is how I’ve survived 11 years of schooling and 17 years of hospital stays.  Everyone’s situations are different, so do what works for you.

Prioritize the work: It totally depends on the situation on whether you can complete homework in the hospital. It depends on how you feel, how hard the curriculum is, how much medication you’re on and how busy you are with treatment while there. When hospitalized I try to prioritize when I feel at least somewhat decent. If there’s homework that I find easier or won’t take long to complete, I try to get that done during my stay (and sometimes even get help from my nurses)! But if there’s homework I need help on, or don’t feel up to doing, I try to schedule a way to do it (and get help on it) once I’m discharged.

Communicate early:  If you’re unexpectedly hospitalized (which has happened to me plenty of times), it can be really frustrating and stressful, just from a medical standpoint plus you have school to worry about, too. At the beginning of each semester or when I get new teachers, I make sure I have their contact information. That way if and when I need it, I have it. If I’m not expecting to be admitted but am, the first thing I do (once I feel good enough) is email my teachers. Most teachers are very willing to help you out. Once your teachers know, you can figure out a plan together and everything will be just fine. Education is very important, obviously, but I’ve learned that the main thing is to always focus on getting better before anything else.

Start early:  If you have a chronic condition and think you might be hospitalized often, my biggest piece of advice would be to figure out a system while you’re young. Especially before high school if you can, as classes get harder, so does staying up with everything.

Good luck with everything, whether it’s educationally, medically or otherwise, and remember you can do anything you put your mind to. Don’t let anything (like being in the hospital) stop you.

Posted in Neurology, NICU, Patient Stories, Youth Advisory Council | 4 Comments »

Where the heart is

Friday, February 15th, 2013

Mindy, several months pregnant with her second child, wore a used, silver bangle bracelet a stranger had given her: “With God all things are possible – Matthew 19:26.” Even though she instinctively knew something was terribly wrong with her pregnancy, she was sure her unborn child would be okay. She would have bet her life on it, she said.

She would soon learn that she was right – about everything. Something was wrong. Charlie had a complex congenital heart defect. Specifically, he had transposition of the great arteries. Dr. Amarjit Singh, a now retired pediatric cardiologist at The Children’s Heart Clinic at Children’s Hospitals and Clinics of Minnesota, diagnosed Charlie after a series of ultrasounds and wrong answers from other doctors. Mindy was right about something else, too. In the end, everything would turn out okay with her son.

Baby Charlie, hospitalized at Children's, with mom, Mindy, looking on

Charlie was born in 2005 at Abbott Northwestern Hospital. Immediately after entering this world, he was rushed through a quarter-mile underground tunnel to Children’s. His oxygen levels were dangerously low. Once at Children’s he immediately had an emergency surgical procedure known as a septostomy. A septostomy creates a hole between the heart’s chambers and allows for oxygen rich blood to mix within the heart, thus allowing oxygen to reach the body.

Following the septostomy, it was discovered that Charlie had a stroke. It’s unclear when it occurred – either during resuscitation following his birth, or during the septostomy, Mindy said. In the following days, he worked to recover from the traumatic events on the day of his birth. Eventually he became stable enough to undergo a complex lifesaving open-heart surgery.

Mindy has recorded this story for a book, “Embracing Charlie.” It’s a story about love, strength and faith. The love she and her husband shared as they built a family. The strength they showed when they learned their son had a heart defect. But mostly, the story is about Mindy’s faith despite the challenges she faced.

She is honest, giving outsiders a peek into her world as she and her husband, Paul, searched for answers and, when they got them, how they prepared for a son with a heart defect.

Mindy, who spent three years off and on writing, said she was inspired by a connection she made with a Boston family whose son also had transposition of the great arteries. As she prepared for Charlie’s birth, the family sent Mindy a photo of the boy. That photo gave her more reassurance than any doctor could, she said.

“When I first started thinking about writing, I wanted to be that to somebody else,” she said. “[The photo] gave me a sense of hope, to see what our life could still look like.”

Paul, Mindy, Charlie and Sophie

After several weeks in the hospital recovering from open-heart surgery, Charlie went home. Developmental milestones were delayed. He received speech, occupational, and physical therapies to address his challenges from the stroke and made great progress, Mindy said. For a long time, he favored his right side. Today, he’s right-hand dominant, and you would be hard pressed to notice that anything had ever happened to him.

He continues to have follow-up visits with a neurologist. He also goes to the Heart Clinic for regular check-ups. Future surgeries are possible. “He may need something, but in the scheme of heart surgeries, he’s been through the worst of it,” she said.

Mindy has “absurd gratitude” for her son’s care team, which included surgeons Dr. Francis Moga and Dr. David Overman. And she’s grateful for Dr. Singh for his incredible commitment to his patients and for giving her answers when others couldn’t.

“As a pediatric cardiologist, one of the joys of our job is that we get to see the babies with very complex health issues grow up into wonderful young people who still love us in spite of the pain and discomfort that we may have put them through,” said Dr. Singh. “The other is that we meet some incredible families. Charlie and his parents are one such family. I was very fortunate to care for Charlie and to know his parents. They are extraordinary people. It was my privilege to see him grow up to be happy loving child.”

Dr. Singh and Charlie

Charlie, 7, is delightful, Mindy said. He is an extrovert in an “oddly mature way.” He’s obsessed with artists Claude Monet and Vincent van Gogh.

“It’s like there’s an old man trapped in there,” she said.

Mindy often thinks back on the day she received the bracelet from a stranger and the faith that came with it. That day, she had prayed for a sign that everything would be okay.

She was working at a dental clinic when a colleague approached her with the bracelet. A patient had given it to Mindy’s colleague after she asked where she had gotten it because she wanted to get something similar for Mindy. The patient removed the bracelet and urged the colleague to give it to Mindy.

“I asked Jesus to show himself to me, and he responded, with jewelry,” she said.

She no longer wears the bracelet. She gave it to another mother of a newborn cardiac patient while Charlie was at Children’s.

Charlie

The experience of her son’s heart defect has taught Mindy to “embrace the darkness and troubles.” There’s growth in that, she said.

“It changed our lives for better. I couldn’t have seen that at the beginning,” Mindy said. “It gave the gift of perspective.”

To read the first chapter of Mindy’s book, check out her blog.

Posted in Cardiovascular, NICU, Patient Stories | 10 Comments »

Addressing preemie care head on in 2013

Wednesday, November 28th, 2012

By Dr. Ellen Bendel-Stenzel

As the Star Tribune so beautifully illustrated with its Thanksgiving cover story, “Home After 98 Days In Preemie Land,” the issue of prematurity is a heart-wrenching and persistent challenge for doctors and parents-to-be.  Preterm birth can, and does, affect every race, ethnicity, religion, age, socioeconomic status and demographic.

Here in the Upper Midwest, more than 200,000 babies are born every year. And about 22,000 of those babies or little more than 10 percent are born premature. However, as a preterm infant, you couldn’t ask to be born in a better place than Minnesota. We have some of the highest survival rates in the world, and yet we received a “B” on the March of Dimes 2012 Premature Birth Report Card.  Why?  Because even though an infant born beyond 28 weeks gestation, or 7 months of pregnancy, has a nearly 100 percent chance of survival, these infants still remain at risk for respiratory problems, feeding issues, developmental delays and behavioral and social disabilities.

Unfortunately, the amazing medical progress we’ve made over the past 25 years, which lead to the improved outcomes for so many premature infants, has begun to plateau. Now we as health care providers need to take the lead and drive future improvements.

There will always be high-risk pregnancies, and ensuring the best outcomes for these scenarios is not dependent upon reducing the prematurity rate alone.   We need to be proactive and provide optimal care to both mother and baby, so that we can decrease the incidence of prematurity and improve the outcomes of those born early or with complex medical conditions. In short, we need to address the needs of the infant long before a mother’s due date.

In early February of next year, Children’s Hospitals and Clinics of Minnesota and Abbott Northwestern Hospital will open The Mother Baby Center in Minneapolis. It will be the first of its kind in the Upper Midwest, and one of only a few in the nation where mother-baby care is fully integrated. This new Center will bring together maternal and infant specialists, with the understanding that every pregnancy has the potential to be high risk.

With a proactive approach, the goal is clear: optimize care from conception to delivery.  This means the sharing of information across all nine months of the pregnancy whenever possible.  It means providing quick access to specialists when concerns for the health of either the mother or baby arise. It means collecting data to look at the root cause of prematurity in our own community.  It means collaborating in clinical trials that start at the first obstetrical visit and end in the pediatrician’s office at school age follow-up.  And it means continuing to incorporate the latest technologies and therapies on the Newborn Intensive Care Unit (NICU), while simultaneously measuring their effects and proving their validity.

While simple in theory, these are lofty goals that are difficult to implement and execute, but are well worth the effort.  As physicians we must continue to set the bar high and help moms achieve term delivery whenever possible, while at the same time improve the care for the babies that are born early.  In doing so, we’ll create a recipe for success that will provide enormous benefits to Minnesota babies and families.

Dr. Bendel-Stenzel is a neonatologist and co-director of clinical research for the Newborn Intensive Care Unit at Children’s Hospitals and Clinics of Minnesota in Minneapolis.

Posted in Advocacy, NICU, Research, The Mother Baby Center | No Comments »

The Windschitl preemies: ‘Ours for the lovin’

Thursday, November 15th, 2012

By Sara and Nick Windschitl

Sara and Nick are the new parents of twins Bryn and Nora, who were born at 27 weeks.

When we heard that November was Prematurity Awareness Month, we thought, “Wow—people need a month to be aware of prematurity?” People who don’t have preemies probably never think about prematurity (unless they had a preemie Cabbage Patch doll like I did when I was 5), and people who do never STOP thinking about preemies. I know Sara and I haven’t! In June, the two of us wrapped up our school years. I said goodbye to my kindergartners, Sara said goodbye to her third-graders, and we jumped excitedly into a summer of Expecting Twins.

Sara prepared herself for getting huge, I started putting cribs together and we oscillated between excitement, disbelief and freak-out moments. At our 19-week ultrasound, we learned that Sara’s body might not want to hold these babies in as long as they needed to fully cook, and at 22 weeks she was sentenced to Hospitalized Bed Rest—her greatest pregnancy fear.

Five weeks later, the babes had had enough and decided to grace us with their tiny presences at 27 weeks. If you know anything about preemies, you know that 28 weeks is kind of the “safety zone” when it comes to avoiding a laundry list of long-term health issues, but despite Sara’s attempt to keep her legs crossed as tight as she could, the girls chose Aug. 6 as their birthday.

It was scary for us to know we had 27-weekers. Bryn weighed 1 pound, 4 ounces, and Nora weighed 2 pounds. But they were breathing on their own just a few short hours after birth and showing us their fighting spirits. This, along with the prayers being poured out from our friends and family (and strangers!), gave us an overwhelming sense of peace and calm. We also knew that at Children’s Hospitals and Clinics of Minnesota, we were in one of the best places in the world for preemies (yeah, we Googled that, too). The doctors and nurses that we encountered at Children’s were incredible. Each had skills that very few people in the world possess—the ability to not only care for these micro babies but also to work with parents who are scared yet extremely protective of the little lives they created.

Fast forward a month, and the girls were ready to move into the Infant Care Center at Children’s, where we continued to receive great individualized care. They moved into a class of “feeders and growers” with minor hiccups here and there—breathing issues, a hernia surgery, feeding struggles. There were days we just wanted to stick them in our pockets and make a run for it, get them home and start our new normal. After three months in the hospital, all we wanted was to tuck our girls in ourselves and read them a bedtime story without the constant background music of the monitors or to make farting noises on their bellies without wires getting in the way. That’s what every dad wants to do, right?

(As we write this, we are going on Day 98 in the hospital and are preparing to bring our girls home the following day!) What we’ve waited for so long now seems like the most daunting and scary thing we could ever do. We are keenly aware of our blessings these last 98 days, as having 27-week-old twins could have had a lot more downs than ups, but here we are, ready to bring home a 5 ½ pound baby and a 7 ½ pound baby—both healthy and ready to keep their parents from ever sleeping again!

Fast forward another 24 hours and these beautiful girls are home, where Sara and I are doing the normal parenting things, like checking to make sure they are breathing at 3:31 am.  Yep, these girls are healthy!  They are no longer those little translucent red nugget preemies that blessed this world in August.  They are real, wireless, peeing, pooping, crying, smiling, wide-eyed (only at 3:31 in the morning) babies.  Yes, we still need to be very cautious with these girls.  No, we won’t be taking them to the store.  We won’t be able to have many visitors.  We will be hand-washing and “foaming in” so frequently that a person outside of Preemie Land would say, “You MUST be OCD.”  I guess Children’s did one heck of a job on us because, as all parents of preemies know, we need to be!

Just like Sara’s pregnancy, the future is scary and unknown, but thanks to Children’s, we have babies who are breathing, growing and finally ours for the lovin’.

 

 

Posted in NICU, Patient Stories | 9 Comments »