Role of the Fetal Care Nurse Coordinator and the Patient-Family Experience

That means our next speaker, which was a video, uh, um, tape or record speaker, is Melissa Minges. She's one of our lead nurse coordinator in the, uh, fetal care center. Her mainly specialty or patient that take care of is are those patients who has renal disease. And she is also the leader of our focus uh renal group. Uh, we will start our first talk with Melissa Mendes uh and go from there. Good morning. My name is Mel Mingus and I am a nurse coordinator at Cincinnati Children's Fetal Care Center. A little background about myself is that I started my career as a labor and delivery nurse at Good Samaritan Hospital here in Cincinnati in 2001. In 2008, I became an inpatient nurse at the fetal care center and provided care to our pregnant moms who were undergoing fetal surgery. In 2011, I became a nurse coordinator at our center, and then in 2017, I obtained my certification in perinatal loss care. I have had the opportunity to participate in and watch the growth of our center over the past several years, and I have been very lucky to work alongside very knowledgeable pediatric surgeons, maternal fetal medicine doctors, neonatologists, and other specialists in the field of fetal medicine. These experiences combined with the opportunity of working closely with our fetal families has allowed me to grow as a nurse coordinator and has enabled me to understand and identify what is truly important with regards to being a nurse coordinator in fetal care. For this global cast, I am excited to talk about my role as the nurse coordinator and about the patient-family experience at our center. I oftentimes have been asked, what is a nurse coordinator. A nurse coordinator in fetal care is a nurse that helps to coordinate the care of and be an advocate for a pregnant woman and her fetus during a high-risk, complicated pregnancy involving a fetal anomaly. We are nurses who specialize in organizing patient care by incorporating all members in the care team. In the field of fetal care, nurse coordinators are essential members of the team, and we help prevent fragmented care by acting as a point of contact for the patient and the care team. We try to ensure seamless transition from one care area to another. With the complicated nature of healthcare today, our pregnant moms and their families need someone to help them navigate through the care continuum. So, um, what do fetal care nurse coordinators help with? So we build patient confidence by empowering them with knowledge through education about their specific fetal diagnosis. We improve patient satisfaction and care outcomes by facilitating collaboration of all team members. We improve access to care. We decrease stress by helping to build trusting relationships between patients and their care team. We provide safer care by sharing pertinent information among all of the care providers involved with the patient. We evaluate patient progress through close follow-up with the patient and referring providers to ensure the opportunity of timely fetal interventions when appropriate. We increase patient compliance and follow through recommendations set forth by the team. We promote continuity of care. We advocate for the patient by ensuring that their needs and preferences are known and addressed, and we track important data points for each patient to aid in research to improve patient outcomes. At Cincinnati Children's Fetal Care Center, we have 5 nurse coordinators who all come from varying backgrounds such as labor and delivery or NICU experience prior to working in fetal care. Having this type of nursing experience before entering into this field is necessary since fetal care involves caring for not just 1 patient, but 2, meaning mom and fetus. The 5 nurse coordinators at our center have the ability to care for any fetal diagnosis, but we all have our strong suits or diagnoses that we have an interest in and that we've become experts on. For instance, um, I have a strong interest in renal fetal anomalies and bladder outlet obstruction, and I am the nurse that most often will assume these patients as my own at the time of referral. This allows the patient to interact and be cared for by a nurse in the field who has an extensive amount of knowledge regarding a specific diagnosis. Not many people can say that they truly enjoy their work or their job, but that is something I can honestly say. My job allows me the opportunity to help patients during one of the most difficult times in their life, which is what I love about my job. The nurse coordinators and fetal care work closely with our patients for an extended period of time, which results in more than just the average nurse-patient relationship and oftentimes results in a friendship or a bond. We get to know the patient's family, their other children, the type of work that they do, what their hopes and goals are for the pregnancy, and what their fears may be. We are able to walk alongside our patients during their pregnancy journey. I still communicate with several of my patients that delivered years ago who keep me updated on their family and how their child is progressing. It is very rewarding for me as a nurse to have this type of relationship with my patients. Given that this particular global cast is about renal anomalies, I thought it would be most informative to describe what a patient referred to our center for bladder outlet obstruction may experience. Referrals for boo can come through as a patient's self-referral or from the patient's local MFM or obstetrician and typically are around the time of their um anatomy scan, so between 18 and 22 weeks gestation. Once our center receives the patient's chart, the nurse will triage the chart, extracting important information about the patient's medical and surgical history, previous pregnancies, allergies, current medications, referring fetal diagnosis, ultrasound reports, any genetic testing results, and any fetal procedures that may have been performed prior to the referral, such as bladder taps. This chart review allows the nurse coordinator to have detailed information on the patient prior to speaking to her for the first time on the phone. After review, the nurse collaborates with the physicians to determine what testing should be ordered and a time frame that the patient should be seen within. The nurse coordinator will typically call the patient within 24 hours of referral, and this is where the nurse-patient relationship begins. This phone call will involve a review of the patient's medical history, what to expect at their evaluation in Cincinnati, and we will begin to discuss um what the patient has been told about her baby and what her understanding is of the diagnosis. As a nurse, this is a great opportunity for me to educate the patient on her diagnosis. This phone call covers a lot of material and time is allotted for the patient to ask any questions she may have. This is also a time where we discuss financial travel and lodging concerns. If any of these are identified, the nurse will communicate with Heather, our social worker, and request that she reach out to the patient with resources. After the phone call, an email is sent to the patient with important contact information about our center, a link to our website, and education material uh regarding the referring diagnosis. The patient is also given the nurse on-call contact information, which is a service provided where patients can reach a nurse coordinator 24/7. My goal as a nurse coordinator is to educate the patient as much as possible regarding the diagnosis so she and her partner are well prepared. The patient is free to communicate with me over the phone and or through email with any questions or concerns they may have. Our renal patients typically undergo a 2-day evaluation with testing, meaning MRI, fetal echocardiogram, and ultrasound on day 1, and then several meetings with the team on day 2. During the evaluation, the patient and her family will meet with the nurse, social worker, and genetic counselor during her scheduled clinic visit. In the afternoon of day 2 is when the multidisciplinary team meeting will occur, which will include maternal fetal medicine, pediatric surgery, neonatology, the kidney specialist, and any other specialist that may be needed. The goal is to deliver the information to the patient and her family in a cohesive group. On occasion, individual consults may be necessary for team members not able to attend the meeting. Images from the MRI and ultrasound are shown to the patient and the diagnosis is discussed. Each specialty will have the opportunity to speak to the patient and answer any questions they may have. Options available in the uh in the pregnancy for the patient are discussed such as aggressive care, expectant management, comfort care, and termination. If the patient is a candidate for fetal interventions, the physicians will discuss risks and benefits of each procedure. The team will elaborate on what the remainder of the pregnancy will look like for each option discussed, as well as delivery recommendations and what care the baby may need postnatally. The nurse coordinator will attend the team meeting as well and take notes for the patients so that they can concentrate on the conversation with the specialist. These notes are will be housed in the after-visit summary, and the patient takes that with them, and they can use those notes to reflect back on. Some of our patients elect termination of the pregnancy. The nurse coordinators and genetic counselors at our center can help the patient navigate through that process as well and provide support before and after the termination procedure is performed. We have a designated bereavement specialist and her name is Beth for our fetal center, um, and she will reach out to these patients to see how they are coping and provide resources as needed after the procedure is performed. So, if a patient appears to be a fetal surgery candidate for bladder outlet obstruction at the time of the team meeting and has not had previous bladder taps or genetic testing performed, there is an algorithm we follow to help us determine what fetal interventions the patient may be a candidate for. So, um, this diagram gives us an idea that we start out with, uh, bladder taps where we drain the bladder completely and the urine that we aspirate out of that bladder is then sent for electrolytes and genetic testing. On the right side of the diagram, you can see that if the genetic testing is abnormal or not compatible with life, that that patient would not be a candidate for fetal interventions. On the left side, you can see that if the genetic testing is normal, there are uh two arms after that. So on the far left, if the bladder does not refill as expected after the tap, then this patient may be a candidate for serial infusions either by direct approach or through amnio port in the pregnancy in hopes of helping to develop fetal lungs. And then in the middle of the diagram, you can see that if the bladder does refill after a tap, that that patient may be a candidate for a bladder shunt or fetoscopic disruption laser ablation of the valves. For those that choose fetal interventions, weekly ultrasounds to assess amniotic fluid, Doppler flow studies, and how effective the fetal intervention is working are are usually indicated. Antenatal testing usually starts between 28 and 32 weeks gestation, but this can vary based upon the clinical picture. Relocation to Cincinnati may need to occur at some point in the pregnancy. This is where Heather, our fetal or, uh, fetal social worker, can be a great benefit to our patients, as she will work closely with them to identify resources. Upon relocation, transfer of care to Tri-State Maternal Fetal Medicine or University of Cincinnati Medical Center, maternal fetal medicine Group will occur. Some fetal interventions may require patients to relocate to Cincinnati. Um, at the time of procedure, such as placement of the amnio port, which typically gets infused 1 to 3 times per week. Some patients may choose to drive to Cincinnati 1 to 3 times per week for the infusions, but if a patient lives hours away, driving 3 times to Cincinnati a week just is not feasible. If delivery is recommended to occur in Cincinnati for an out of town patient, relocation later in gestation gestation may need to happen between 32 to 36 weeks gestation. For those patients who had fetal interventions for bladder outlet obstruction in the pregnancy, um, In the pregnancy, but they may not need to relocate to Cincinnati immediately or ever, which would be an example of a bladder shunt. The nurse coordinator will still follow these patients closely by reviewing the ultrasound reports from the patients referring MFM. No matter if the patient had fetal interventions or chose expectant management, multiple conversations happen between the patient and her nurse coordinator, with several check-in points during the pregnancy. The follow-up phone calls and email conversations allow the nurse coordinator to assess how the patient and family are coping and make referrals as needed. For our patients that plan to deliver in Cincinnati for bladder outlet obstruction, we typically will have a repeat MRI with lung volumes at 32 to 34 weeks gestation, along with a follow-up team meeting with maternal fetal medicine, pediatric surgery, neonatology, and palliative care to discuss delivery planning, and again, the postnatal plan of care for the baby as this plan may have changed since the patient's initial evaluation. For deliveries occurring at Cincinnati Children's Fetal Care Center, the nurse coordinator works closely with the patient in preparation for her delivery at our center. So, for time's sake, I will start to wrap this up here. Fetal care is a unique field of practice. Given that every fetal care case is different, every patient is in need of individualized care that involves many members of the team from several different specialties. Good care of these patients requires close collaboration amongst the team and a close relationship with the patient. Because the clinical scenario can change quite quickly, close follow-up of these patients is necessary by the nurse coordinator. Educating our patients is a key component to the best possible outcomes because empowering the patient with knowledge allows them to make educated choices for their unborn child and family. For our patients, receiving the news that their child has a complication is incredibly stressful and has the potential to be life-changing, but having a caring fetal care team and nurse coordinator that the patient is able to trust can make a world of difference. Thank you for giving me this opportunity to talk to you about my role as the nurse coordinator and the patient family experience at Cincinnati Children's Fetal Care Center. Hope you have a good day.