{"id":10824,"date":"2017-06-22T08:09:49","date_gmt":"2017-06-22T14:09:49","guid":{"rendered":"https:\/\/www.uchealth.org\/today\/?p=10824"},"modified":"2021-09-07T18:00:07","modified_gmt":"2021-09-08T00:00:07","slug":"new-mom-tackles-lethal-illness","status":"publish","type":"post","link":"https:\/\/www.uchealth.org\/today\/new-mom-tackles-lethal-illness\/","title":{"rendered":"New mom tackles lethal illness"},"content":{"rendered":"
<\/div>

The young mother lay in the Intensive Care Unit, color draining from her body. Her organs were failing. A team of pulmonary and heart specialists raced to try and save her life after a helicopter brought her to UCHealth\u2019s University of Colorado Hospital<\/a>.<\/p>\n

Weeks earlier, before the birth of her second child, Danielle, then 24, had been energetic and fit. Her husband was serving in the Army at Fort Carson in Colorado Springs. Danielle worked at a dialysis center, went to school and loved working out, hiking in the mountains and taking their son, Nico, to the Garden of the Gods <\/a>where he could climb on little rocks while she gazed up at a cathedral of red spires.<\/p>\n

\"Danielle
Danielle with her husband, Sean. Photo courtesy of Destiny Marvin.<\/figcaption><\/figure>\n

Now Danielle could barely breathe. She held her mother\u2019s hand and asked a question that was haunting them both.<\/p>\n

\"Danielle
Danielle, right, with her mom, Destiny Marvin, at Red Rocks. Photo courtesy of Destiny Marvin.<\/figcaption><\/figure>\n

\u201cMom, am I going to die?\u201d<\/p>\n

Destiny Marvin did not know the answer, but refused to succumb to their worst fears.<\/p>\n

\u201cShe was blue. I\u2019m holding back tears. I\u2019m panicking inside,\u201d Destiny recalled.<\/p>\n

Still, Destiny willed herself to be strong and fight for both of them.<\/p>\n

She squeezed Danielle\u2019s hand and said, \u201cYou are still alive. Let\u2019s stay positive. We have tons of people praying for you and you have the best doctor.\u201d<\/p>\n

Mystery illness<\/h3>\n

Danielle had just given birth to her baby girl, Haven, on May 10 of last year. After coming home, severe exhaustion overwhelmed her. She lay in bed around the clock, nursing Haven and cuddling with Nico, who was then 4. Her husband, Sean, then 23, tried to be home with his wife and children as much as possible. But he had to go to work too. When Sean was away, Danielle remembers forcing herself to get out of bed every few hours to try and make sure she and Nico kept eating. Even getting up to go to the bathroom took extraordinary effort.<\/p>\n

\"Daniell's
Danielle’s son plays on rocks with his cousin. Photo courtesy of Destiny Marvin.<\/figcaption><\/figure>\n

Danielle knew something was wrong and kept checking with her obstetrician, who wondered if she had lost too much blood during the birth and was anemic.<\/p>\n

Or perhaps she was dealing with post-partum depression. Danielle tried medication for both conditions, but continued to decline.<\/p>\n

Over Memorial Day weekend, Danielle tried to go to Target with Sean to do a little shopping. They put Haven in the cart in her baby seat and Nico skipped in with his dad. Danielle could barely make it from the parking lot to the front of the store. She told Sean she had to sit and rest, that he should go ahead.<\/p>\n

\u201cI was walking like a 90-year-old woman. I could see my heart beating in my chest. I was watching everyone else walking by and thinking, \u2018How can they walk so easily?\u2019 Then it hit me. I waited for my husband and told him, \u2018I need to go to the hospital right now.\u2019\u201d<\/p>\n

The couple returned to their Colorado Springs home and waited for Danielle\u2019s grandmother to come watch the children. Then Sean took his wife to the nearest hospital.<\/p>\n

\u201cThey knew something was wrong, but didn\u2019t know what it was,\u201d Danielle said.<\/p>\n

She spent a miserable night struggling to breathe.<\/p>\n

\"Danielle
Danielle and her husband, Sean. Photo courtesy of Destiny Marvin.<\/figcaption><\/figure>\n

\u201cI literally had to tell my brain to take a breath in and out. It was like someone was smothering you or an elephant was sitting on your chest or you were at the bottom of a dog pile.\u201d<\/p>\n

In the morning, a cardiologist conducted an echocardiogram to assess Danielle\u2019s heart function and within five minutes said he needed to rush her to UCHealth University of Colorado Hospital (UCH). He told her she had a rare illness called pulmonary hypertension.<\/p>\n

\u201cYou\u2019re going to be on Flight for Life. I know a doctor who specializes in this. He\u2019s going to help you.\u201d<\/p>\n

There was no room for Sean on the helicopter. Everything became a blur for Danielle. Sean called her mom and told Destiny to race from her home south of Denver to Aurora so she could meet Danielle.<\/p>\n

\u201cIt was surreal. When I got to the ICU, there were probably 15 or 20 doctors and nurses, and my mom was waiting,\u201d Danielle said.<\/p>\n

Among them was Dr. David Badesch<\/a>, the man who would help save Danielle\u2019s life.<\/p>\n

Research fuels lifesaving treatments<\/h3>\n

Badesch heads UCHealth’s Pulmonary Hypertension Program<\/a> at the University of Colorado Hospital<\/a>. It’s one of the leading research centers for the disease in the world. For decades, the Comprehensive Lung and Breathing Program<\/a> has led and participated in vital clinical trials for drugs that have dramatically boosted life expectancy for patients suffering from pulmonary hypertension.<\/p>\n

\u201cBack in the 1980s, when the disease was originally being described, the survival was only 2.8 years,\u201d Badesch said.<\/p>\n

Now, thanks to extensive research, median survival has improved to seven years or more. And some patients do much better.<\/p>\n

When Danielle arrived for help, she was in grave shape.<\/p>\n

\u201cShe was at considerable risk of dying. If she had come in even a few days later, it might have been too late. She was already in shock with liver and heart failure,\u201d Badesch said.<\/p>\n

\u201cWe see many sick folks and she was among the most ill at the time of presentation. Her case necessitated a very fast evaluation and getting her immediately on to therapy. We have a fantastic team of nurses, physicians and nurse practitioners,\u201d he said.<\/p>\n

Almost immediately, doctors threaded a catheter through Danielle\u2019s jugular vein in her neck, then through the superior vena cava and the right side of her heart into the lungs. Known as a right-heart catheterization, the procedure allowed the team to directly measure blood pressure in the lungs and blood flow generated by the heart. They confirmed that Danielle was suffering from pulmonary hypertension. As with many of the most severe cases, the cause for her case is unknown and therefore called idiopathic pulmonary hypertension.<\/p>\n

It\u2019s possible that the hormonal changes in pregnancy aggravated her illness; given that her heart had swollen to two times its normal size, doctors told Danielle that they were amazed she managed to give birth to a healthy baby and survive herself.<\/p>\n

Once the diagnosis was confirmed, Badesch and his team began giving Danielle a medication that they helped develop and test at UCH more than 20 years ago called prostacyclin. They started with a small dose and increased it gradually.<\/p>\n

While Danielle was finally receiving lifesaving treatments, she was not out of the woods.<\/p>\n

Her mom remembers keeping a close eye on her coloring and vitals.<\/p>\n

\"Danielle
Danielle gets a visit from her little sisters during her treatment at UCHealth’s University of Colorado Hospital. Photo courtesy of Destiny Marvin.<\/figcaption><\/figure>\n

At first, her nails were chalky from lack of oxygen. Her kidneys were failing to produce urine.<\/p>\n

\u201cI remember looking at that bag and saying, \u2018Please God, let there be urine. Let her organs start working again,\u201d Destiny said.<\/p>\n

Destiny was unrelentingly positive with Danielle, but sometimes had to take breaks in a nearby sanctuary room.<\/p>\n

\u201cI had to walk into that room. I dropped to my knees and cried my eyes out. But somehow she pulled through. Her organs started to pull through,\u201d Destiny said.<\/p>\n

Danielle was coming back to life, but was angry. She wanted to be with her baby, son and husband. She wanted to be a normal young woman again. She wanted to be able to go to the gym and do cardio and strength training like she always had. She didn\u2019t want to face the idea that she was stuck with a scary, chronic illness.<\/p>\n

The caregivers understood.<\/p>\n

\u201cDr. Badesch and his team were so gentle. They went over the top to be supportive of us as a family. Danielle really is alive because of how fast they moved,\u201d her mother said.<\/p>\n

Making peace with a new life<\/h3>\n

The medicine that keeps Danielle alive is also her pesky companion. Along with the accoutrements of all moms \u2014 like diaper bags, snacks and car seats \u2014 Danielle must carry a little backpack full of medication and backup doses everywhere she goes. The backpack contains a pump loaded with a cassette of prostacyclin. The medication travels from the pump through tubing to a catheter in Danielle\u2019s chest. It delivers infusions directly to Danielle\u2019s heart.<\/p>\n

While the medication keeps Danielle alive, it requires great attention to detail. Danielle has to keep everything sterile and carefully load new doses of the medication each night.<\/p>\n

As she recovered, she had to find the will to live with permanent restrictions.<\/p>\n

For instance, doctors often warn patients with pulmonary hypertension not to spend time at high altitude, but Danielle loves the mountains. To begin to feel like herself again, the family took a brief trip to Summit County<\/a> last August. Danielle had to monitor her oxygen levels, but as she breathed in the scent of pine trees and gazed out of over Lake Dillon<\/a>, she began to make peace with her losses.<\/p>\n

\u201cI was still sad about the whole thing, but it showed me I could still go to the mountains,\u201d she said.<\/p>\n

The family recently celebrated Haven\u2019s first birthday. These days, Haven is saying da da, mama and baby as she carries baby dolls around. She loves dancing and adores her big brother.<\/p>\n

Danielle has learned to relish every moment with her children.<\/p>\n

\u201cI would hate to miss all the special things they\u2019re doing,\u201d Danielle said. \u201cI\u2019m grateful to be able to take care of them.\u201d<\/p>\n

She also has begun to think about the future. She\u2019s eager to return to school someday to earn a master\u2019s degree in education.<\/p>\n

\u201cI want to teach at a Christian elementary school,\u201d Danielle said.<\/p>\n

And she\u2019s dazzling Badesch with her fitness levels. She\u2019s back to working out and each time she comes in for a follow-up visit, she completes a step test to prove her mettle. During a recent visit, Danielle asked if she could run during the test. Badesch gave his approval.<\/p>\n

\u201cI don\u2019t care how you get there,\u201d he said.<\/p>\n

\"Danielle
Danielle loves working out, including with her boxing trainer. Photo courtesy of Destiny Marvin.<\/figcaption><\/figure>\n

\u201cOK,\u201d Danielle joked. \u201cNext time I\u2019ll bring my roller skates.\u201d<\/p>\n

Danielle said she is forever grateful to Dr. Badesch and his team.<\/p>\n

\u201cThey made sure I understood all that was going on. I always have their support. They made it a little easier for me to accept (my illness),\u201d she said.<\/p>\n

As for Dr. Badesch, seeing a patient like Danielle thrive fuels the motivation for groundbreaking research.<\/p>\n

\u201cIt\u2019s a huge challenge to actually cure this disease. Right now, what we have are treatments that are successful in controlling it,\u201d Badesch said.<\/p>\n

The onset of pulmonary hypertension is often between age 20 and 50. While the idiopathic form is rare and Danielle\u2019s case was especially severe, Badesch has treated other young mothers who were stricken. Decades ago, when young women received the diagnosis, they often were advised to \u201cget their affairs in order.\u201d<\/p>\n

\u201cYoung women essentially were being given a fatal diagnosis. But now (with improved treatments) and continuity of care, we see many of these women back 15 or 20 years later. Their kids have grown up. That\u2019s what excites me most about what we do,\u201d Badesch said.<\/p>\n

Danielle continues to do remarkably well and the team will keep a close eye on her.<\/p>\n

Said Badesch: \u201cHopefully, we\u2019ll be able to see her raise her baby.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"

The young mother lay in the Intensive Care Unit, color draining from her body. Her organs were failing. A team of pulmonary and heart specialists raced to try and save her life after a helicopter brought her to UCHealth\u2019s University of Colorado Hospital. Weeks earlier, before the birth of her second child, Danielle, then 24, […]<\/p>\n","protected":false},"author":2123,"featured_media":10836,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","footnotes":""},"categories":[7],"tags":[84,2597,3512,82,177,1497],"class_list":["post-10824","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-stories","tag-cardiology","tag-comprehensive-lung-and-breathing-program","tag-heart-and-vascular-care-cardiovascular","tag-heart-and-vascular-care-cardiology","tag-pulmonology","tag-uchealth-university-of-colorado-hospital"],"acf":[],"yoast_head":"\nNew mom tackles lethal illness - UCHealth Today<\/title>\n<meta name=\"description\" content=\"The young mother lay in the Intensive Care Unit, color draining from her body. 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