{"id":12347,"date":"2021-02-27T07:23:32","date_gmt":"2021-02-27T13:23:32","guid":{"rendered":"https:\/\/www.osfhealthcare.org\/blog\/?p=12347"},"modified":"2022-02-09T14:26:14","modified_gmt":"2022-02-09T20:26:14","slug":"life-saving-surgery-saves-baby-with-heterotaxy","status":"publish","type":"post","link":"https:\/\/osf-blog.live.imagescape.com\/blog\/life-saving-surgery-saves-baby-with-heterotaxy\/","title":{"rendered":"Life-saving surgery saves baby with heterotaxy"},"content":{"rendered":"

Amy was 32 weeks pregnant when she was sent for a maternal-fetal consultation.<\/a><\/p>\n

Something concerning had shown up on her ultrasound, but Amy and her husband, Jason, weren\u2019t worried at that point. They had already had two healthy pregnancies, and this one seemed no different.<\/p>\n

\u201cWe were really hoping things would be fine, and we could grab a quick date night snack before picking up our kids at daycare and school,\u201d Amy said.<\/p>\n

\u201cWithin an hour, we were at OSF HealthCare Children\u2019s Hospital of Illinois,<\/a> we were sitting down with a pediatric cardiologist and he explained to us a diagnosis we had never heard of before.\u201d<\/p>\n

Their daughter, whom they would name Hannah, had heterotaxy \u2013 a rare condition that affects how the child\u2019s internal organs, including her heart, were forming.<\/p>\n

\u201cWe were in shock. It just seemed so surreal because we had had two seemingly normal, healthy pregnancies. And then they are telling me she might need multiple heart surgeries in her first year of life,\u201d Amy said.<\/p>\n

Heterotaxy: \u2018A unique arrangement of organs\u2019<\/h2>\n

Nearly five years later, Amy and Jason are well versed in the list of things that makes Hannah\u2019s body one of a kind, a \u201cunique arrangement of organs,\u201d Amy calls it.<\/p>\n

Due to Hannah’s heterotaxy, her liver is unusually placed, and she has two right-shaped lungs. She also has intestinal malrotation \u2013 which means her intestines are abnormally twisted. And she was born without a spleen, which plays an important role in the immune system.<\/p>\n

But what doctors were most concerned about was Hannah\u2019s heart. She had complex congenital heart disease<\/a>, including holes in both the upper and lower chambers of her heart.<\/p>\n

\u201cThey were thinking within 6 to 9 months \u2013 maybe a year \u2013 she would be needing major surgery,\u201d Jason said.<\/p>\n

Hannah had her first heart surgery when she was 3 weeks old when her oxygen levels unexpectedly dropped. Surgeons installed a Blalock-Taussig (BT) shunt, a small tube to create a pathway for blood to go from the heart to the lungs.<\/p>\n

\u201cThat\u2019s when we got to know all the doctors and all the pediatric ICU nurses because that hospital stay was 4 weeks,\u201d Amy said.<\/p>\n

But Hannah\u2019s heart journey was just beginning. Because of the complexity of her heart defects, Hannah would sooner or later need a major repair.<\/p>\n

A life-saving surgery<\/h2>\n

Knowing that their child was facing a difficult journey, Jason and Amy decided to seek second opinions with other congenital heart programs to see what the best part forward for Hannah would be.<\/p>\n

\u201cWe wanted to see the bigger picture,\u201d Jason said.<\/p>\n

Hannah had two congenital defects that would potentially be addressed: atrial septal defect, or ASD<\/a>, which is a hole between the top two chambers of the heart, and ventricular septal defect, or VSD<\/a>, a hole between the lower chambers.<\/p>\n

As they were searching for a surgical solution, Hannah\u2019s parents and doctors would need to determine whether only one of the holes could be closed or if surgeons could close both, giving Hannah a four-chambered heart.<\/p>\n

Hannah\u2019s doctors at OSF Children\u2019s Hospital encouraged the family to look at all the options available, sharing their imaging and consulting with teams from other health systems. They even built a 3D model of Hannah\u2019s heart to help visualize her unique anatomy.<\/p>\n

OSF Children\u2019s Hospital in partnership with the Advanced Imaging and Modeling (AIM) Lab<\/a>\u00a0developed a way to turn 2D images seen on a traditional MRI into 3D images that can be printed into an exact physical model of a patient\u2019s heart.\u00a0The couple still has their plaster copy of Hannah\u2019s heart at their home in Washington, Illinois.<\/p>\n

Taking this imaging technology to another level, Hannah\u2019s team at OSF Children\u2019s Hospital was able to view that 3D model in virtual reality, so her surgeon, Mark Plunkett, MD<\/a>, could not just see, but interact with Hannah\u2019s heart so he could confidently lay out a surgical plan that would give Hannah the outcome her parents hoped for.<\/p>\n

\u201cWe knew we wanted that four-chambered heart because it would help Hannah in the long run and would have a better overall life expectancy. They had that scan and were able to look at the heart as if it was real to be able to tell if there was enough room to give us that four-chambered heart. We were much more confident with OSF and their ability to do the surgery,\u201d Amy said.<\/p>\n

Hannah had her bi-ventricle repair in November 2018, when she was 2 \u00bd years old. After four weeks in the hospital, she recovered and has an active life.<\/p>\n

Hannah\u2019s parents are grateful for the life she\u2019s had so far. And while she will continue to face challenges, she will face them with parents who love her and a team of health care professionals committed to giving her a full and healthy life.<\/p>\n

\u201cWe really trust our team. We feel like they are a great team of nurses and doctors. We have handed our baby over to them many times for her surgeries, and they have been able to give her an amazing life. She goes to pre-school and the babysitters, and she\u2019s living a normal 4-year-old\u2019s life right now,\u201d Amy said.<\/p>\n

For Amy and Jason, connecting with other parents has been an important part of their support system, whether local organizations like TOUCH or through Facebook and online groups.<\/p>\n

\u201cI just want other families to have hope that their child can live, can survive, and live a healthy life with heart defects. I want them to know that there are places they can reach out to for support,\u201d Amy said. \u201cI just want other families to know they are not alone on this journey.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"

Amy was 32 weeks pregnant when she was sent for a maternal-fetal consultation. Something concerning had shown up on her ultrasound, but Amy and her husband, Jason, weren\u2019t worried at that point. They had already had two healthy pregnancies, and this one seemed no different. \u201cWe were really hoping things would be fine, and we […]<\/p>\n","protected":false},"author":60,"featured_media":12354,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_lmt_disableupdate":"","_lmt_disable":"","footnotes":""},"categories":[116,223],"tags":[745,700,193,142,1013],"coauthors":[757],"class_list":["post-12347","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-pediatrics","category-patient-story","tag-child-development","tag-congenital-heart","tag-heart-surgery","tag-childrens-hospital-of-illinois","tag-virtual-reality"],"yoast_head":"\nLife-saving surgery saves baby with heterotaxy<\/title>\n<meta name=\"description\" content=\"Baby Hannah was diagnosed with heterotaxy, a rare condition that affects how a baby\u2019s internal organs form while in the womb.\" \/>\n<meta name=\"robots\" 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