{"id":313526,"date":"2024-06-10T16:43:53","date_gmt":"2024-06-10T21:43:53","guid":{"rendered":"https:\/\/www.liveaction.org\/news\/?p=313526"},"modified":"2024-06-13T15:39:17","modified_gmt":"2024-06-13T20:39:17","slug":"mom-says-babies-trisomy-18-deserve-dignity","status":"publish","type":"post","link":"https:\/\/archive.liveaction.org\/news\/mom-says-babies-trisomy-18-deserve-dignity\/","title":{"rendered":"Mom says all babies with Trisomy 18, like her stillborn daughter, deserve ‘care and dignity’"},"content":{"rendered":"
<\/div>

Upon request, the names have been changed to protect privacy.<\/em><\/p>\n

On August 19, 2023, Hannah Miller* took a pregnancy test. She says she did so \u201chonestly for fun,\u201d because she did not believe she could possibly be pregnant yet, since she and her husband Mike* had only been married since July 1. Much to her surprise, however, the test was positive.<\/span><\/p>\n

\u201c<\/span>I couldn’t believe it,\u201d she told Live Action News.\u201dI played my baby [a worship song]<\/span>\u00a0and praised God with her.\u201d<\/span><\/p>\n

The Millers wanted to minimize medical interactions and interventions during their pregnancy and pursue a more natural pregnancy and childbirth plan. To that end, they eschewed genetic testing and early ultrasounds, and relied on a midwife for early prenatal care.<\/span><\/p>\n

In December 2023, however, Hannah underwent a 20-week anatomy scan. Her midwife found signs of spina bifida and referred them to a maternal-fetal medicine (MFM) specialist in Dallas, near where the Millers lived, who ultimately confirmed the diagnosis.\u00a0<\/span><\/p>\n

Because the Millers wanted to pursue fetal surgery to correct their baby\u2019s spina bifida, they were required to undergo prenatal genetic testing. These tests were positive for Trisomy 18<\/a>, which disqualified them from being eligible for in-utero corrective surgery.\u00a0<\/span><\/p>\n

Because heart problems are common<\/a> in children with Trisomy 18, the Millers were referred to a fetal cardiologist, who diagnosed their baby with a heart condition known as <\/span>atrioventricular canal defect<\/span><\/a>. According to Miller, the cardiologist said the Millers\u2019 baby would require postnatal surgery to save her life, but also said that she knew of no doctors within the Dallas-Fort Worth area who would be willing to operate on a baby with Trisomy 18. She told the Millers that the only doctor she knew of who would likely be willing to help was a surgeon at Dell Children’s Hospital in Austin.\u00a0<\/span><\/p>\n

Determined to do everything they could to fight for their child\u2019s life, the Millers contacted Dell Children’s Hospital on February 2, 2024. Over the next few weeks, they met with multiple Dell staff members and began making plans to have their baby at the hospital’s special delivery unit (SDU).<\/span><\/p>\n

\u201cWe are here to help you.\u201d<\/b><\/p>\n

About a month and a half later, Miller spoke to a MFM specialist at Dell, who outlined the requirements with which the Millers would have to comply in order to give birth at Dell\u2019s SDU. The Millers readily assented to these conditions.\u00a0<\/span><\/p>\n

Then, on April 2, they met with an obstetrician-gynecologist who advised them of his team’s non-negotiables for providing care, to which the Millers agreed. They discussed each part of their birth plan with this doctor, and, though a few aspects of their plan required a bit of negotiation and modification, an agreement was ultimately reached, Miller said.\u00a0<\/span><\/p>\n

The Millers went on to meet with Dell’s NICU team and the nurse navigator assigned to them, with whom they went over their birth plan. Miller recalled that none of these staff members raised any objections.\u00a0<\/span><\/p>\n

The Millers were particularly pleased with their interactions with their nurse navigator, who treated them with “great warmth and compassion,” according to Miller. On April 3, they had an extended phone call with her, again outlining their birth plan and preferences. About two weeks later, they provided her with a written copy of their birth plan, which Miller understood to be a list of preferences and requests, not demands. Miller said she regarded their birth plan as a sort of “wish list,” and knew that she would not be granted every request.\u00a0<\/span><\/p>\n

Their nurse navigator reportedly told the Millers that the birth plan was well-written, and that it would be helpful to the team at Dell.<\/span><\/p>\n

Four days later, on April 19, their nurse navigator notified the Millers via email that she would be out of the country on vacation for a few days. \u201c<\/span>I will reach out once I return to the country,\u201d she wrote. \u201cWe are here to help you.<\/span>\u201d<\/span><\/p>\n

Sudden about-face<\/b><\/p>\n

Later the same day, the Millers reportedly received an email from Dell\u2019s chief nursing officer \u2013 someone with whom the Millers say they had never previously interacted. The message said that Dell was “unable to safely meet [the Millers’] birthing requests.” Without detailing any specifics, it stated that the Millers\u2019 birth plan was unacceptable. In spite of the fact that the Millers had already been given firm indications that their requests were acceptable \u2013 although not entirely implementable \u2013 and even though the Millers had agreed to be flexible, the email informed them that they would not be permitted to deliver at Dell.\u00a0<\/span><\/p>\n

The Millers say they immediately called the chief nursing officer and told her that they were willing to modify their birth plan in any ways the hospital deemed necessary and asked which aspects of it were problematic. The chief nursing officer, however, did not provide any specifics.\u00a0<\/span><\/p>\n

Later, the chief nursing officer called the Millers back and informed them that Dell was standing by its decision to refuse care. Miller says that although she attempted to work things out, the chief nursing officer hung up on her and subsequently blocked the Millers’ calls.\u00a0<\/span><\/p>\n

The next day, the Millers called the SDU twice, trying to get clarity on the situation. Each time, they were reportedly told someone from leadership would call them back. Each time, they waited for the promised follow-up call in vain.<\/span><\/p>\n

On their third attempt to reach out by phone to the SDU, the Millers were transferred to someone in security who told them to cease and desist contact attempts or face harassment charges.<\/span><\/p>\n

\u201cI was just left scrambling\u201d<\/b><\/p>\n

The Millers had no further contact with the SDU. However, after \u201cseveral days of waiting and unanswered emails,\u201d Dell\u2019s NICU team reached out to the Millers \u2013 on Miller\u2019s due date \u2013 to inform them that, although SDU delivery was still not an option, the NICU staff was nonetheless willing to provide the postnatal care their baby would need, should they choose to transfer her to Dell following delivery elsewhere. <\/span><\/p>\n

The conversation also revealed that the team at Dell had essentially misunderstood the Millers\u2019 wishes with regard to their birth plan, and had not properly comprehended the couple\u2019s level of flexibility.<\/span><\/p>\n

Miller described the NICU team as \u201ccompassionate,\u201d but expressed frustration with her experience with the SDU. <\/span><\/p>\n

\u201c<\/span>I didn’t have counsel or advice, and I didn’t even know what part of my birth plan they were concerned about. I was just left scrambling,\u201d she told Live Action News. \u201cMy birth plan was a plan to give my daughter a chance at natural labor, but not at the expense of her life\u2026. If someone would’ve understood that, and also worked with us on a plan to have measures in place to protect her as we attempted that, I think things would’ve been different.\u201d<\/span><\/p>\n

Ultimately, the Millers delivered at another hospital on May 8. Tragically, their daughter was stillborn.<\/span><\/p>\n

The Millers shared more details about their daughter\u2019s birth in her <\/span>obituary<\/span>:\u00a0<\/span><\/p>\n

We marveled over her, held her, stroked her beautiful hair, touched her perfect nose, kissed her lips. We were in awe. In love. Over the moon to finally see our precious daughter.\u2026 She was held and loved for hours. She had a beautiful Christening while everyone was together and the priest lifted her up to heaven and baptized her in the name of the Father, Son and Holy Spirit.<\/span><\/i><\/p>\n

[She] is our first born, precious daughter. An image bearer of the King of the universe. She was all ours. Mommy would carry her 1,000 times just to know her, to behold her.\u2026 Our time with her was a gift from heaven. It could never be replaced and we wouldn\u2019t trade anything for every second we had with our daughter.<\/span><\/i><\/p><\/blockquote>\n

\u201cA gift from God\u201d<\/b><\/p>\n

After everything the Millers went through, what they want to emphasize is the value of their daughter\u2019s life, and that of all babies with Trisomy 18. \u201cMy wish is that every baby with Trisomy 18 would be loved and cared for and given every intervention, every hope, and given the care and dignity that would be given to other children,\u201d Miller told Live Action News. \u201cI hope people know that a Trisomy 18 child is a gift from God and an honor to hold and to know.\u201d\u00a0<\/span><\/p>\n

\u201cI don’t get to live my life anymore with my child,\u201d she concluded, \u201cbut her dignity and her impact on my life and my husband’s life in the ten months we had her would be worth dying for.\u201d<\/span><\/p>\n

*Names have been changed to protect privacy.<\/em><\/p>\n

The DOJ put a pro-life grandmother in jail for protesting the killing of preborn children. Please take 30-seconds to TELL CONGRESS: STOP THE DOJ FROM TARGETING PRO-LIFE AMERICANS.<\/i><\/b><\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

Upon request, the names have been changed to protect privacy. On August 19, 2023, Hannah Miller* took a pregnancy test. She says she did so \u201chonestly for fun,\u201d because she did not believe she could possibly be pregnant yet, since she and her husband Mike* had only been married since July 1. Much to her […]<\/p>\n","protected":false},"author":788,"featured_media":313748,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"om_disable_all_campaigns":false},"categories":[9455,9459],"tags":[],"yoast_head":"\nMom says all babies with Trisomy 18, like her stillborn daughter, deserve 'care and dignity'<\/title>\n<meta name=\"description\" content=\"After a scary struggle to get medical care for her and her daughter, one mother hopes everyone will recognize the value of every child.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/archive.liveaction.org\/news\/mom-says-babies-trisomy-18-deserve-dignity\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Mom says all babies with Trisomy 18, like her stillborn daughter, 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