Amanda Romanelli AFE Survivor Fund

Happiness Turns to Tragedy

July 20, 2019 was supposed to be one of the happiest days of our lives but it quickly turned to tragedy.

It started in February when Amanda announced that she and her husband Mario were having a baby!  A baby they tried “forever” to conceive.  A few weeks later we found out there were 2 babies, a girl and a boy! We were over the moon with pure joy.

It wasn’t an easy pregnancy but it remained joyful. The nursery was decorated with his and her cribs and wall décor.  The infant clothes with funny sayings on them about “my brother” and “my sister” were already lining the closet, the baby shower was planned, and the names were chosen …Mila and Vinny. Then on 6/10/19, we learned of the horrific news that little Vinny didn’t make it. He was going to be stillborn due to umbilical cord complications. We were devastated. But we, especially Amanda, had to be strong and concentrate on Mila now.

Mila seemed to be in a rather big hurry to make her entrance, inducing several trips to the hospital with contractions. On July 20th the trip was different. Amanda was 8 weeks early but Mila was determined this time. Amanda was dilated 5cc. and it stayed like that for hours. We were prepared that Mila would need to go to NICU for probably 2-3 months and maybe weigh about 3 lbs., but eventually she’d end up a healthy normal baby. We’d all go home and live happily ever after.

In general, the mood was upbeat. Except for Amanda who was very uncomfortable and experiencing some anxiety. After all she was having contractions for hours already but not dilating any further. Amanda is well known to be a worrywart since she was a very young child. She was sure something had to be wrong though the numbers on the monitor showed nothing. She asked the nurse to bring the doctor to examine her again. We all stepped out to the waiting room across the hall.

We heard the familiar “Code C” called on the overhead speakers and continued chatting.  A moment later we watched as clinicians were running down the hall with medical carts past the waiting room straight into Amanda’s room. We all thought the worst for little Mila. What we didn’t realize at that moment was that it was Amanda who was in trouble.

 

Amniotic Fluid Embolism

We learned that Amanda had an Amniotic Fluid Embolism (AFE) and immediately went into cardiopulmonary arrest. We had never heard of this condition, but started to research it, learning of this devastating, unpredictable, life-threatening, instantaneous birth complication that can affect both mother and baby. One description after another depicted exactly what happened to Amanda next, known as the second phase of AFE. She began to bleed profusely requiring massive blood transfusions.

 

AFE can be fatal, especially during the first stage. According to the AFE Foundation, death occurs within an hour after symptoms start in 50 percent of cases. Most patients lapse into a coma within moments, and those that survive enter into the second stage of AFE. The hemorrhagic phase, which is often accompanied by severe shortness of breath, shivering, coughing, vomiting, and excessive bleeding due to a condition called DIC (disseminated intravascular coagulation).

 

As mentioned above in Amanda’s case DIC causes blood to leak from the body because it can no longer clot. The low blood pressure leads to cardio-vascular collapse, which causes fetal distress and can lead to the death of the infant if not delivered immediately. This condition is truly devastating, and there are no warning signs. There are no known prevention or treatment methods, and there are no diagnostic tests available.

 

It’s important to note that AFE can affect anyone, including perfectly normal pregnancies during labor or shortly after giving birth in both vaginal and cesarean births. It cannot be prevented.  It can affect you, your baby, or both of you. It happens when amniotic fluid (the fluid surrounding your unborn child) or fetal cells, hair, or other debris make their way into the blood.  However the same amniotic fluid can and often does enter the mother's bloodstream during any other delivery, as well without causing problems. To date, it's not clear why. AFE is rare occurring in approximately 1 in 40,000 births, and yet it is the second leading cause of maternal deaths in the United States.

 

Shocking Reality Sinks In

 

While we remained in the waiting room the clinical staff performed 37 minutes of CPR on her restarting her heart a few times but ultimately she had to be put on ECMO (heart lung machine). Baby Mila was pulled from the womb by the labor and delivery doctor and placed in an incubator and rushed to the NICU. We saw her on her way to the NICU and she appeared to be ok but the horror of what was happening to Amanda soon took back center stage. During the CPR compressions her ribs lacerated her liver and she was bleeding internally. She was rushed into surgery where her abdomen was opened so the liver could be packed in hopes that her DIC would resolve itself. The physicians did not paint a good picture. She was being transfused almost constantly because of her bleeding. The EEG they did also did not show any promising results. There was very little brain activity.

 

They told us the next 48 hours were extremely critical. Even if she survived the MDs weren’t sure if her brain would be intact. Her kidneys had shut down and she was on 24/7 dialysis. She was also intubated and on a respirator. Because her kidneys weren’t functioning she was retaining fluids. Her entire 5’1’’ petite little body blew up like a balloon. She was literally unrecognizable.  Her arms and legs looked as though they might burst because of the excessive fluid. The fluid was restricting blood flow in her limbs but the surgeons were more concerned with her liver. If her liver died she would not survive.

Four days later Amanda’s blood started clotting but within a matter of 11 days my daughter endured 8 surgeries to repack her liver and to place lacerations in her legs in order to relieve the pressure on the arteries. Even though these measures were taken her right leg began to die. The surgeons told us the leg was not permitting her liver to heal and so on August 9th while Amanda remained comatose and without her knowledge the leg was sadly amputated at the hip for any possible chance to save her life.

 

Miracle of Miracles

 

Shortly after her amputation my daughter was completely taken off the heart lung machine and was removed from intubation and given a tracheotomy and slowly she was weaned off the respirator. We still didn’t know what her brain functionality was going to be like. While her eyes would be open from time to time she would not respond to any commands. Her liver was recovering and she would follow voices with her eyes so the ICU doctors were hopeful that her brain was functioning.

 

On August 28th, 38 days after her AFE, Amanda began to answer questions by nodding her head! She also moved her fingers ever so slightly on her left hand upon command! This was a major development! It meant that her brain was able to process a command and send signals to her hand to move her fingers!

 

Our daughter can now speak and is very slowly gaining strength back in her arms. She was told about her right leg amputation and as you can imagine she was devastated but she’s beginning to accept her new normal. When we asked the physicians what we can attribute Amanda’s remarkable recovery to… they tell us it is nothing short of miraculous.

 

Donations

 

The donations to this fund will help Amanda, her husband Mario, and daughter Mila with various current and future expenses. While our girls are still hospitalized, it will immediately help with hospital parking, meals, lost wages, insurance deductibles, and copays. When Mila is discharged as expected in the next few weeks, they will incur childcare expenses and once Amanda is finally discharged, there will be at-home nursing care expenses and increased insurance premiums.

 

There will be expenses with Amanda’s prosthetic leg and the need to purchase a wheelchair -accessible vehicle. Mario is currently concerned about the need to move from their current 3-story rental home, and purchase a single level home requiring a down payment, moving and renovation expenses for disability friendly bathrooms, widened doorways and ramps for easy mobility and wheelchair access. About a year from now Amanda will need to go through multiple reconstructive and plastic surgeries to rebuild her abdominal wall along with the wounds to her left leg. Hospital and insurance expenses will continue to rise. According to financial advisors that deal with similar unexpected medical tragedies, expenses can be astronomical.

 

Words cannot express our appreciation for your caring.  You have begun to fill the painful void in our hearts just knowing there are people out there that actually care and may understand our agony. Knowing we are not alone in our battle is priceless.  Please know you will be helping a young and beautiful family that is truly in need. You will become a part of their miraculous story and we will be forever grateful to you. Your donation will help our beloved Amanda, Mario, and Mila to someday return to a somewhat normal life as mother, father, and daughter that they have always wanted to be.

 

We thank you deeply from the bottom of our hearts!!