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Pregnancy help groups step up to serve parents with prenatal diagnosis PrenatalDiagnosis.org

Pregnancy help groups step up to serve parents with prenatal diagnosis

A prenatal diagnosis is a traumatic event for the mother and father who receive the news. In cases of a prenatal diagnosis, abortion (or “termination”) is often offered first to the families immediately following the diagnosis. Sometimes they may not even hear of any other treatment options or options to carry their child to term. 

These situations come up often in the political and public discussions on abortion. 

The pro-choice side frames abortion as the most compassionate option for a mother carrying a child with a prenatal diagnosis. 

For pro-life people who work in the pregnancy help movement, it is important to understand that a woman seeking abortion due to a prenatal diagnosis may differ drastically than the other types of women seeking abortion who we help. 

These women generally want their child. What is unexpected or unplanned or unwanted is the diagnosis, not the pregnancy or the baby. 

Additionally, the trauma they have incurred can greatly hinder their ability to sort through their feelings and think about what they truly want for themselves and their child. 

Because mothers facing a prenatal diagnosis and being offered abortion are in such a unique situation, the pro-life and pregnancy help movement must understand that helping these women and their families looks different than they might be used to. 

How do we discuss options with this woman? What does support look like for her? What does she need?

A collaboration among Her PLAN, String of Pearls, Be Not Afraid (BNA), Charlotte Lozier Institute (CLI), and Heartbeat International, has come together to address the topic of prenatal diagnosis and the support women and families facing this situation need. 

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There are two tools now in effect, with a third tool on the way. 

The first tool is a website, prenataldiagnosis.org, which has factual information on various prenatal diagnoses, how screening and diagnostic tests work, support groups, further reading referrals, and more. 

The website is written for mothers and others facing a prenatal diagnosis but is useful for anyone wanting to know more about these hard situations. 

The second tool is a Parent Care Coordinator (PCC) training program through BNA, which equips a person to be able to support mothers in this specific situation and walk with her through the rest of her pregnancy. 

The third tool, coming very soon, is a hotline for mothers to call so they can be connected with a PCC and/or other support resources.

To pull back the curtain a bit on this training process and the uniqueness of situations involving a prenatal diagnosis, let me share with you some of Heidi and Daphne’s story and Heidi’s experience with the PCC training program. 

Daphne and Heidi share their stories

Daphne Harris Robinson, LAS, is the Founding Executive Director Of Atlanta Morning Center (ATLMC) and Heidi Martin, BSN, RN is the Manager of Palliative Care Case Coordination at ATLMC.

Heidi was a NICU nurse for 20 years before turning her nursing career into a missional focus. Her son, Asher, was not diagnosed prenatally; however, shortly after birth, Heidi began to notice that Asher was not feeding normally — he was constantly vomiting. X-rays confirmed he had Hirschprung’s Disease. 

At the time of her son’s birth, Heidi had been a NICU nurse for 10 years already. 

She said of the diagnosis:

“My husband and I were in shock that our apparently healthy boy wasn't. Though I had all of this NICU knowledge, the disease had hit our son and now the thought of our son in the NICU, needing surgery, and then a colostomy scared us both. There’s an immediate sense of loss, and grief comes quickly.”

When Asher was 9 months old, Heidi could not hide her concern that there was something else going on with Asher’s health. 

A very specific genetic test diagnosed him with Mowat-Wilson Syndrome, a very rare syndrome that affects a child’s development for the rest of their life. 

The results of that test were devastating. Heidi described the experience this way:

“After waiting 6 weeks for the results, we received a phone call from the GI doctor, while driving home from a family vacation at Disney World. I was sitting in the back of the car with Asher and praying with all my might that the results would be normal, but my spirit knew they wouldn’t be. A very quick call with the Dr, and an “I’m so sorry,” and our world forever changed…The thought of the loss of a developmentally normal son was almost more than I could bear. The rest of our ride home was quiet. I stared out the window trying not to cry the whole way and not allow my thoughts to wander and think of all the things Asher likely wouldn’t do. That day will forever be ingrained in my mind, stirring up emotions for as long as I live.”

Heidi and her husband also had a daughter before Asher was born. Balancing being a mother to a toddler, a mother to her newly diagnosed baby, a wife, and playing NICU nurse all at the same time was incredibly stressful for Heidi. 

She continued working as a NICU nurse, but now with a more profound understanding and empathy for both the babies and their mothers. 

She explains: 

“With every patient from that point on, I could see my son lying in that isolette. Their cries, or their pains, now moved me in a different way. They moved me not as a nurse, but as a mother! I was now keenly aware of certain physiologic symptoms that accompanied all of the disease processes my son suffered from and was able to intervene for the patient promptly. Additionally, I now knew all those fears and emotions and griefs the mother on the other side of that crib was feeling. I was empathetic to them in a unique way, and I was now able to care for the mother of the baby in a new, more compassionate, and personal way. I don’t think it was until after I had my son in the NICU that I really began to excel in NICU nursing care, because now I knew what it was like to be on both sides of that crib.”

However, Heidi found that her time as a NICU nurse was beginning to wear on her. 

After 20 years, she desired her nursing to be more missional-focused. She reached out to Daphne at the Atlanta Morning Center (ATLMC) and God worked mightily to create a way for Heidi and Daphne, friends for over 10 years, to now work together. 

Daphne explained to Heidi something ATLMC was getting involved in, which was partnering with BNA to serve clients who had a prenatal diagnosis. BNA is led by Tracy Winsor, who also conducts the training program. This was a ministry near to not only Heidi’s heart, but Daphne’s, as well.

Daphne’s story encompasses a history of infertility, high-risk pregnancies, pregnancy loss, the premature birth of a very low birth weight baby, a NICU stay for her (2 lbs. 15.9 oz) and her eventual graduation from the NICU after only 12 days at 2 lbs. 11 oz. At only 25 weeks, Daphne was diagnosed with pregnancy-induced hypertension and her body was attempting to go into labor. The doctors told her that the only way to save her life was to deliver her baby prematurely. 

“Due to her prematurity, I literally had to decide between the life of my unborn child or my own…. I told the doctor that I loved my baby more than I loved my own life and asked the doctors what prevented me from serving as her human incubator…I had chosen to give my baby the best possible chance at life that I could, and I was trusting the Lord with mine and asked Him to give the medical team wisdom and to give me peace.”

Daphne was in the hospital for 8 weeks, enduring a diagnosis of pregnancy-induced hypertension (PIH) that caused her baby girl to have Intrauterine Growth Restriction (IUGR), meaning that as well as likely being born prematurely, she would be born with a low birth weight.

Deidre Hannah (Daphne’s daughter) and Asher (Heidi’s son) are now 28 and 12, respectively. 

Heidi and Daphne have now both been through the BNA training program They have so much personal connection to this aspect of ministering to mothers in need, and it their caring hearts are evident in the words they have shared with me. 

The pregnancy help community can step up

Daphne and Heidi shared a bit about their experience with the training and why they think it is important for those in the pregnancy help movement to be prepared to help mothers facing a prenatal diagnosis.

While ATLMC already provides prenatal care and postpartum care for mothers up to one year after the birth of their child, Daphne wanted to partner with BNA and receive the PCC training because “this service within ATLMC will enable us to serve a broader spectrum of patients (mothers and unborn children) and their families during a ‘crisis’ pregnancy different than that which is the focus of the more traditional PRC/PMC. ATLMC is humbled and privileged to be able to walk with families in this very sacred space.”  

Heidi stated the need more personally: 

“It’s important because loss leads to grief. A prenatal diagnosis is a loss. It’s a loss of a normal pregnancy. It’s the loss of a healthy birth. It’s the loss of a healthy baby. It may be the loss of bonding after birth due to NICU stays. It may be the loss of the healthy future of your child and all their milestones. It may be the loss of a son or daughter’s life. Any support that allows a parent to begin to walk through the grief cycle is good and healthy, so that when the child is born they have been coping and can better handle the intense challenges that come with it. The grief cycle hits everyone differently, and if we can decrease the trauma of entering into it as much as possible, why would we not do that? Grief that is poorly managed can lead to lifelong problems. Parents need to be able to focus on their new baby, not on the crisis of entering into grief.” 

After going through the training, Daphne said: 

“The manner in which the training was presented was very well organized and informative. Not only was the issue presented, but the grace- and hope-filled, patient-centered (mother and child) solution was not only explained but demonstrated in great detail. The personal testimonies from parents who have received care from BNA and the trauma informed care were particularly well received.” 

Heidi commented on a specific aspect of the training that she felt was the most meaningful or helpful: 

“The Trauma Informed Care. During the training, Dianne Ecret stated, ‘Trauma has no boundaries. It doesn’t discriminate.’ This is critical to recognize as a trainee, as every single person who faces a negative prenatal diagnosis will face trauma…It is necessary that we seek to not re-traumatize people, but rather move them beyond the trauma in as healthy a way as possible…Trauma is not abstract. It has real physiologic effects and so we must provide trauma informed care to these parents.”

Parents who receive a prenatal diagnosis are often not given the support or resources they need to make an informed decision. They feel at odds with the medical team, overwhelmed with grief, and unsure or unable to work through their trauma. 

But parents who are connected with support resources fare much better emotionally and psychologically. 

As Heidi put it, “for those families who had received BNA care upon initial prenatal diagnosis, there was a level of peace, contentment, and acceptance that was undeniable. They indicated an experience that left them knowing they had done everything they had desired for their child, a relationship with the medical team that was not powerless for them, and peace with the outcome, whether it was a living child with a disability or a child who had passed on.” 

A restorative effect

Having now cared for families since receiving the BNA training, Heidi has been able to personally witness its truly restorative effects on families. 

Though it was a late referral, Heidi began supporting a family of a baby diagnosed with Trisomy 18. The baby had already been sent home from the hospital with hospice, and parents were told she likely wouldn't survive past a few days. 

Initial contact with the family revealed the mother to be completely fearful, uneducated about the diagnosis and medical equipment, helpless, and depressed. 

After just a few weeks and long hours with the family providing education on the diagnosis and medical equipment, connecting them with a developmental pediatrician and establishing care with a local PCP, making referrals to necessary medical disciplines that might be able to intervene to allow better quality of life, Heidi watched this mother move out of depression and receive permission to parent her baby! 

No longer was she waiting for her baby to die, but she was now actively advocating for her and parenting her. Heidi watched the tears turn to smiles. The BNA model of care gives parents in crisis a voice and permission to be the parent to their child. This is truly priceless!

This is the kind of care we want more families to be able to have access to. 

What choice are these families truly being given by their primary OBGYNs? In many cases, no choice at all. The parents are left despondent and hopeless. 

But we in the pregnancy help movement can step into that gap and try to provide a route of connection for them. 

Tweet This: We in the pregnancy help movement can step into the gap & try to provide a route of connection for parents who receive a prenatal diagnosis

We have a wonderful opportunity to provide a special kind of care to the women who seek abortions based on a prenatal diagnosis. And as we have so many times in the past, I am confident we as a movement will again step up to the plate to love these women, their families, and their tiny children.

Editor's note: Heartbeat International manages Pregnancy Help News.

Petra

A Kansas City native who transplanted to Columbus, Ohio, in 2014 to attend graduate school at Ohio State University, Petra has her M.S. in chemistry and loves to teach chemistry and biochemistry while geeking out on science-related news. Writer and Editor for the Human Defense Initiative, she is passionate about the pro-life movement and uses her science education and teaching skills to speak up for the most vulnerable humans among us.  She currently teaches chemistry at OSU-Lima. Follow her on Twitter at @StupidRock.

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