An inspirational mom gave birth to her son at just 26-weeks after she developed a rare life-threatening pregnancy condition.
The condition which is only cured by delivery, saw her newborn spend 99 days in intensive care.
When Jackie Mangiolino and her husband Mike, both 31, from Bellmore, New York, fell pregnant, they were ecstatic after spending years building up their businesses before starting a family.
Baby on board: Jackie Mangiolino, 31, from Bellmore, New York was forced to deliver her son Richie at just 26 weeks after she developed the life-threatening HELLP syndrome
Swollen: Jackie, pictured with her husband Mike, said she first noticed something was wrong after gaining 10 pounds in a few days and experiencing high blood pressure
Miracle baby: Jackie was in and out of hospital for several days before HELLP syndrome, a rare liver and blood clotting disorder, was diagnosed, and her newborn spent 99 days in the NICU
Despite feeling wonderful throughout much of her pregnancy, Jackie had borderline high blood pressure.
When she noticed that she was becoming very swollen and had gained 10 pounds in a few days, she checked her blood pressure and found it to be dangerously high.
WHAT IS HELLP SYNDROME?
- HELLP syndrome is a life-threatening pregnancy complication that causes the breakdown of red blood cells, elevated liver enzymes and a low platelet count.
- The most common symptoms of HELLP syndrome can include severe headaches, nausea, upper right abdominal pain or tenderness, fatigue, swelling, high blood pressure and protein in the urine.
- HELLP syndrome can be difficult to diagnose and its symptoms are sometimes mistaken for gastritis, flu, acute hepatitis or gall bladder disease.
- HELLP syndrome affects less than 1% of pregnancies and rarely occurs before the third trimester. It also may occur within 48 hours of delivery.
- Delivery of the baby is the best way to stop this condition from causing any serious complications for mom and baby.
- Some experts believe HELLP syndrome is related to preeclampsia, a pregnancy complication that causes high blood pressure.
She was in and out of hospital for several days before HELLP syndrome, a rare liver and blood clotting disorder, was diagnosed.
HELLP syndrome causes the breaking down of red blood cells, elevated liver enzymes or proteins and low platelet count.
On one of the days where she discharged, she found out her platelet levels had dropped, but not critically.
At a GP appointment the next day, protein was found in her urine and after a restless night with painful indigestion, Jackie was admitted to hospital for the final time, having contractions.
Only 26 weeks pregnant at the time, doctors worked hard to keep her stable for six days, prolonging the birth for as long as possible.
‘There is no way to determine how HELLP syndrome is developed and it’s considered a random, unpreventable illness,’ Jackie explained.
‘My doctor trusted my instincts and urged me to continue taking my blood pressure, to stay off of my feet as much as possible, and not to hesitate to call if I felt off. Over the course of the week I only grew more anxious and more swollen.
‘I gained over 10 pounds in just a few days. I took my blood pressure and it was extremely high so we went immediately to the emergency room. My blood pressure eventually came back down, but we noticed that my platelet levels had dropped slightly. It was the very first time I had ever even heard of HELLP syndrome.
‘After being discharged from the hospital, I followed up the next day at my doctor’s office. At that visit we discovered protein in my urine, which indicated preeclampsia, so I went back to the emergency room.
‘When they tested my urine in the emergency room there was no longer protein, but they did notice my platelet levels had dropped a little bit more. Since everything was still low risk, I was sent home.
Emergency delivery: Jackie was admitted to hospital at 25 weeks pregnant and given steroid shots to help her son’s lungs develop before delivery; he weighed just over two pounds at birth
Fighter: Baby Richie didn’t suffer any brain bleeds, heart deformities, or vision or hearing damage despite being born so prematurely
Side effects: Richie does have some chronic lung disease from being on oxygen for a long time during his NICU stay
Chilled out: Jackie says people always comment on how easy going baby Richie is
However, later that night, Jackie developed bad indigestion and felt a pain in the right side of her chest so called her doctor at midnight, who urged her to go back to the hospital.
‘When I got to the hospital I was having contractions, my platelet levels dropped, my liver enzymes were elevated, and my red blood cells were breaking down. I had HELLP syndrome.
Baby on board: The couple was overjoyed when they first learned they were expecting
‘I was immediately admitted and assigned the most elite doctors in the hospital. At that point, I had no idea how sick I was and that I was battling for my life. I was given steroid shots to help my son’s lungs develop as quickly as possible, and put on an aggressive magnesium sulphate drip to help prevent a stroke.
After twenty-four hours, she had stabilized, but Jackie and her doctors had to endure a waiting game of sorts to see if the HELLP would begin to progress again.
‘Once it began to progress, we knew it would be life threatening and that we’d need to deliver the baby via emergency c-section,’ Jackie reveals.
‘I was admitted to the hospital at twenty-five-weeks pregnant and I knew our goal was to stay stable and not deliver for as long as possible. We monitored the baby closely, and it was a huge sense of comfort to see that, while I was sick, he was still growing and healthy.
‘Mike and I made a decision very early on to find as much joy, light, and happiness as we could on the journey.
However on the night of May 25, 2016, Jackie began to feel unwell again: ‘I couldn’t pin point the unwell feeling other than saying that I felt unlike myself, very anxious, and that I had an extremely stiff neck.
‘My husband stayed with me at the hospital that night, where I couldn’t sleep and grew more and more uncomfortable.
‘In the morning, when the entire team of doctors came into my room, I knew the HELLP was back. I just knew it. My nurse held my hand and cried with me an hour later, when I was wheeled down for the emergency delivery.
And Jackie also revealed her nurse ‘will live in my heart forever’.
She explained: ‘She told me her daughter was born, over twenty-five-years-ago, at just twenty-six weeks and then she held my hand and cried with me.
Mama’s boy: Jackie says Richie is ‘intelligent, curious, happy, and full of joy’
Hip hip hooray: Richie celebrated his 1st birthday on May 29 2017
Happy and healthy: Jackie says Richie, now just over a year old, is developing beautifully with the help of a team of therapists
Happy family: The couple say they would love to have more children in the future but are focused on Richie’s heath at the moment
‘It was a brief, deeply meaningful exchange that I will always remember. If I could hold hands with every mother or father who needs their hand held, I would.’
Jackie and Mike’s son Richie was born on May 29, 2016, weighing just two pounds, two ounces and cried as soon as he arrived in the world.
Despite spending the first 99-days of his life in an intensive care unit, Jackie said that the family are ‘so lucky’ that Richie didn’t suffer any major setbacks.
‘He had no brain bleeds, no heart deformities, no vision or hearing damage – he’s just amazing,’ she added.
‘He does have some chronic lung disease from being on oxygen for a long time during his NICU stay, but it’s something we’re hopeful he will outgrow.
‘Right now, he’s developing beautifully with the help of a team of therapists ranging from physical therapy to speech therapy. He’s intelligent, curious, happy, and full of joy.’
Jackie says people comment on how relaxed her family is and know nothing about the journey they’ve had to be together and says she would be there to support every mother and father if she could.
‘It’s funny, people tend to comment about how happy and relaxed we are as a family, and about how lucky we are that Richie is an easy-going baby. They have no idea what we’ve been through,’ she said.
Although the couple would love to have more children in the future, Jackie explained that they are focused on Richie’s health at the moment.
‘I had no idea I could experience such a profound love, and no idea I could also experience daily grief at the passing of time.
‘I’m desperate for each moment to last forever, and yet cannot wait to see what tomorrow will bring. Time is both a thief and a gift, and I can’t make sense of it. That is the most challenging, by far.’