Sunday, 25 May 2014
These babies are just as much a part of us as all of our others, and we would do what ever we could to have them here and watch them grow. This is a page to honour those babies that didn't make it. If you have lost a baby in the journey of placenta previa, and or placenta accreta, we want to honour that baby. Sharing a photo, picture, name, phrase that speaks to you.
Saturday, 24 May 2014
After 7 rounds of intense and emotional IVF procedures, Stephanie Arnold became pregnant with her second child in October of 2012. Beginning after her first ultrasound in the 20th week, Stephanie became overwhelmed with premonitions of her own death. She best explains this feeling as something that made every cell in her body feel like a ticking time bomb. She had no idea that what she was feeling would actually come true.
Her daughter Adina was born 2 1/2 years earlier and delivered by C-Section, so she knew all too well exactly what to expect during the upcoming birth. Due to a placenta previa diagnosis and other factors that complicated her pregnancy, she knew that she needed to plan for the worst. However, it was the premonitions of doom that made planning a high priority. Rather than accepting bystander status, her husband Jonathan was able to step into the forefront as a key player to help her. As an economist, Jonathan realized he needed to set his analytical nature aside and focus on Stephanie’s worries. He knew that trusting Stephanie’s intuition as she cried out for someone to listen to her fears and premonitions was critical.
However, in everyone’s defense, there were no tests or medical books that could have been referenced to predict what was about to happen. All Stephanie had were the premonitions that had consumed her entire life. Though, the one difference between previous premonitions and what she experienced this time around was an overwhelming sense of foreboding. It was different from the traditional worries everyone experiences from time to time. The feeling that she would die, including visions of her own death, penetrated her daily existence and motivated her to get anyone and everyone to listen.
As her delivery neared, she was fortunate enough to have one or two people listen to her due to her persistence. She posted messages on Facebook and even sent goodbye letters. Her feelings were real so her mission became spreading the message, “If you SENSE something, SAY something”. And, if no one listens, you say it again, and again and again! She told everyone that she came into contact with about her premonitions. She hoped that someone, anyone, would relate to her and give her advice on how to proceed. But, ultimately, it was left to Stephanie to speak up and avoid sweeping her feelings under the carpet. Her husband Jonathan was her strongest ally, supporting her through every appointment and every visit, even if as Stephanie says, “he thought I was crazy.” It was the love of her husband, family and friends and all of their support that helped her to become even more boisterous. After all, she was not ready to leave him permanently or leave her children motherless.
During her pregnancy, Stephanie surrounded herself with the best medical professionals and those familiar with what she was going through. All were convinced and conveyed to her that what she was afraid of would not happen, and that the probability of it happening was slim to none. Fortunately, she refused to settle for that and persisted on. Stephanie assumed people thought she was just hormonal and presumed doctors thought she was an annoying patient, but it couldn't have been farther from the truth. Later, she learned that doctors do take premonitions and fear incredibly seriously. Unfortunately, many patients don’t speak up, so their doctors never know about their concerns. “They can't read your mind or your spirit. You know them much better than they ever could and you know yourself and your needs even better,” says Arnold.
Her own gynecologist, the same doctor that delivered her daughter Adina, never made her feel like she was crazy. She understood Stephanie’s fears, but had nothing tangible to work with regarding her feelings. She supported Stephanie by giving her access to more medical professionals to speak with. When she opted to go see a gynecology/oncology specialist, her doctor thought it would be a good idea and was supportive. At 32 weeks she had an MRI which at that point showed no accreta had formed at that point, and when she asked her doctor how likely would it be to have an accreta form by the 37th week-- she said, she had never seen it before. Thinking back, Stephanie believes that her doctor did not believe what happened to have been possible.
On May30, 2013 Stephanie was 36 weeks and at home when she suddenly started to hemorrhage. Her husband Jonathan went into survival mode and rushed her to the hospital for an emergency C-Section. In the middle of delivering their son Jacob, she coded – flat-lined with all electrical signs of life gone! Stephanie was clinically dead for 37 seconds and was kept on life support in a protective coma for 6 days until she stabilized. Her body was riddled with tubes, ports, and monitoring equipment and she had to undergo dialysis to rid her body of the edema. However, they saved her life and brought her back. Today, Stephanie and Jacob suffer no permanent damage, making them a true medical miracle.
Her ob-gyn, Dr. Julie Levitt, and the anesthesiologist diagnosed her with placenta accreta and an - a condition where the amniotic fluid enters the mother’s bloodstream, triggering anaphylactic shock, respiratory failure, cardiac arrest and death. This occurs when the mother happens to be allergic to the amniotic cells. However, the condition is very rare, occurring in roughly 1 in 15,200 pregnancies. In fact, AFE is so rare that Stephanie’s case was the first in the history of their practice. And, while incidences are low, the condition is the second leading cause of maternal death in the United States and the United Kingdom.
At 36 weeks she delivered. The amniotic fluid embolism (AFE) happened and they thought they had the bleed under control when she was put into SICU. 7 hours later, they realized she was bleeding through the uterus. Gyn/onc was called in and performed hysterectomy. The pathology showed an accreta starting to form, which is how the amniotic cells got into the bloodstream causing the AFE. Not visible to the naked eye, because when placenta was delivered, it looked complete.
Coming on in two phases, AFE is extremely catastrophic. In Phase 1, the patient goes into cardiac arrest, the lungs shut down and the body goes into complete shock. Roughly 40% of patients do not make it through this phase, however, Stephanie coded here and lived to tell the tale. Those lucky enough to make it past Phase 1, then have another uphill battle to fight. The AFE stops the blood’s clotting capability, so many patients hemorrhage to death. Due to these factors, it’s currently believed that as many as 85% of AFE patients do not make it out of the operating room. Stephanie credits her survival to her foresight and the conversations she had with her anesthesiologist leading up to Jacob’s birth. She requested that they change her anesthesia order to include more blood, a crash cart and more monitors. “That is 100 percent what saved my life,” says Arnold.
Stephaine needed 60 units of blood and blood products which is classes as a massive blood transfusion.
After clinically dying and coming back, Stephanie has been given a second chance and wants to make every moment count. She says she has good days and bad days - many times feeling survivors guilt and wondering why she was chosen to live. Because of this, she makes sure she is totally present in every second of her life. She values every interaction she has with others because she believes any day above ground is a good day and she is more empathetic than ever.
She often reflects back to being in the ICU, obese with fluid from edema, and recovering from a tragic AFE. The inability to hold her newborn, let alone spend time with her daughter or her stepdaughter because she was not coherent is something she will never forget. She has learned that her family is the most important thing to her and that her husband will always be there for her. His love and his support got her through every single day. According to Stephanie, “I was on low voltage with my intuition because people would look at me like I was a freak if I talked about things I saw. After losing all electricity in my body, I am now on high voltage or supercharged and won't allow anyone to make me feel like a freak when I sense something. Remember, ‘If you SENSE something, SAY something’.” If it will save a life, it only makes sense to speak up – she knows because it saved hers.
According to Stephanie, “They say it takes a village and in my case, it did”. Neighbors were there for her and her family. The Jewish community came together and prayed while other communities also joined in. One doctor said she couldn't give her a medical reason why she survived, so she needed to “go spiritual on this one.” And, she was right as her family leaned heavily on the prayers of the community and its spiritual leaders.
In her "previous" life, Stephanie worked for Lubavitch, as a successful television producer she produced Jewish educational documentaries, including one about the Rebbe Menachem Schneerson (SP). She is also known for covering the story rather than being the news, Stephanie’s multi-talented 27 year television career generated her Emmy Nominations and a Telly-Award as she directed and produced numerous television series, reality shows, music videos and documentaries. In her private life she has been a member of Chabad for many years and was approved to receive a New Hebrew name because of her miraculous story of death and rebirth. Instead of being recognized by Sarah, she is now recognized as Chaya Sarah.
For more information about AFE's and the research being done, please go to www.AFESUPPORT.org for the latest as they are more up to date than your doctors.
Monday, 19 May 2014
WHO - World blood donator day, is quickly coming up.
The theme for this year is.............
"Safe blood for Saving mothers"
Many women with Accreta will need a blood transfusion to save their lives, so that they can be here on the other side. The average transfusion for an Accreta mother is 8 units- around 4 litres of blood. Many however will need much more than that. I myself needed 54 Units and 80 blood products from around 134 donations. Without that gift of safe blood I would not be here today to enjoy my baby growing up. WHO Donor day is a time to for us who have received to help give back, by saying a big 'thank you' to all those that have generously given.
If you, like me, have a received the gift of blood donation and want to be a part of giving back to donors this World Blood Donor Day, then send an email: email@example.com
"Safe blood for saving mothers"
The objectives of this year’s global campaign
Don't forget if you would like to help, or be a face for the International Hope for Accreta Blood Drive in January 2015, please let us know. We look forward to hearing from you.
- Christina Mathewson
Friday, 16 May 2014
I have been diagnose with placenta previa and placenta accreta. Placenta previa is when your placenta attaches low in your uterus, sometimes covering your cervix. This creates a high risk pregnancy. According to The U.S. National Library of Medicine; "During pregnancy, the placenta moves as the womb stretches and grows. It is very common for the placenta to be low in the womb in early pregnancy. But as the pregnancy continues, the placenta moves to the top of the womb. By the third trimester, the placenta should be near the top of the womb, so the cervix is open for delivery. Sometimes, the placenta partly or completely covers the cervix. This is called a previa. There are different forms of placenta previa. Marginal previa is when the placenta is next to cervix but does not cover the opening. Partial previa is when the placenta covers part of the cervical opening. Or complete previa is when the placenta covers all of the cervical opening."
Having placenta accreta means that your placenta begins to act like an amoeba. It starts to morph and attach to everything around it. It can attach to your uterus, your cervix, and your bladder. When you give birth, it most likely will not detach. So therefore, the doctors have to cut around where the placenta has attached itself. If the placenta has attached to your womb, cervix, they will have to take those along with the placenta. This creates a life threatening situation where you can bleed out, get sepsis, and die if not properly diagnosed and treated.
I remember when I got out of the hospital due to high blood pressure. I was so grateful that I did not have pre-eclampsia. I had pre-eclampsia with my prior children. However; I did have gestational hypertension, gestational diabetes, and now placenta accreta. The doctor said that the best case senerio would be to have a planned cesarean hysterectomy at 36 weeks. The alternative was to risk getting sepsis and possibly dying. I thought, "Thanks Doc. I wonder which door I should to take? Loosing my sex drive and womanhood with a side of crazy or eternal sleep? Decisions. Decisions." I remember being so angry at the doctor. I wondered why the doctor acted like it wasn't a big deal to get a complete hysterectomy. I said to him, "Doctor, sir, I have no desire to have a hysterectomy. I would like to avoid it, if possible." “Oh. You’re not finished having babies? ” “No. Doc. That is not the case. I am definitely finished having babies. But, how would you like to loose 3/4 of your balls? Sure it still works, partially. However; do you still feel like a FULL man?” Of course, I didn't ask that. But I wanted to. I was adamant. I did not want to have a hysterectomy. It's my uterus and I wanted to keep it.
Lying there upon the operating table, I ponder upon my situation. I have both complete placenta previa and placenta accreta. I am an extremely high risk pregnancy. I and my team of doctors had been planning on a C-section, possible hysterectomy on October 11th, 2013. I am 34 weeks pregnant. I am in a room full of doctors, only two of which I know. I am alone with these doctors. My husband was not allowed to be with me in the operating room. I'm in the middle of an emergency c-section. I'm scared. I concentrate upon the incubator.
Looking back, I can not tell this story without including the tale of my other son Sirius. The stress of Sirius' plight caused me to go into preterm labor. Previous to my emergency c-section, it was discovered that our son Sirius was very sick. His illness had begun the week before.Sirius had been walking on his tippy toes and claiming that his ankle hurt. Yet, he still ran around being a his normal jovial toddler self. This was Monday.
- On Tuesday, I took Sirius to daycare, like normal. An hour later, the daycare called me and said that I needed to pick Sirius up. He had not stopped crying and claimed his ankle hurt. I brought him home. My husband and I decided that we would wait to see if his ankle would heal before taking him to the doctor the next day.
- Wednesday, I called his regular doctor. We were unable to make an appointment. So I took Sirius to Urgent care to get x-rays. While there, he started favoring his left ankle & limping on his right. The nurse said he could be faking. After the x-rays came back negative, I began to think the nurse might be right. His diagnosis was a bruised heel. The doctor told me to give him Tylenol and keep him off the ankle as much as possible. He could go back to daycare on Monday.
- Friday night Sirius refused to put any weight on his left foot. He started crawling like a baby around the house. He came down with a fever. Now I want to note that there was so swelling of the ankle. And Sirius was still wanting to play and go outside. But I knew something was wrong. I just didn't know how serious I should take it.
- Saturday and Sunday I went back and forth between Tylenol and Motrin to keep his fever down. It never went away, just went down a few degrees. He seemed to progressively get worse. I didn't want to take him back to Urgent Care. On Monday Sept. 23rd, I was able to get him into his regular doctor.
That morning, I had an OB appointment. My husband Scott took Sirius to the doctor. While there, they took x-rays again. They came back negative. The doctor ordered labs. That's when the roller coaster ride began. Sirius' white blood cell count was off the charts, the doctor explained.We needed to take our son to the emergency room immediately. I had a morning appointment at OU Children's Hospital the next day. So, I figured that would be the best place to go in case he had to stay overnight.
My little family waited in the big waiting room. You normally have to wait awhile in the emergency room before being seen. Not this time. Not for us. In a short time we were called into a smaller waiting room. There we met an Orthopedic surgeon that told us that Sirius had what was known as septic joint. He had to be operated upon immediately. The surgeon was explaining Sirius' diagnosis and the eminent surgery. I saw the man's lips moving. I barely could comprehend what he was saying. How could this be happening? My poor baby! It's my fault. I heard the words blood infection, sepsis, and critical condition. All of the sudden, I felt a large gush. I looked down to realize that blood was all over the chair and the floor.
Everything seemed to slow down in that moment. I evaluated my situation. Where am I? I'm in the hospital. Why am I here? Because my son is sick. What am I to do? Deal with it. I began to cry. My daughter started crying. My husband was reserved. My son was sick and sucking his thumb, asleep in his stroller. They brought me a wheelchair and carted me off to maternity urgent care.
While there, my hemorrhaging became increasingly worse. They began to prep me for an emergency c-section. The panic that I felt accelerated to a screaming roar. I couldn't have my baby now, I pleaded. My husband could not be with me. My husband had to be with my son during his operation. He was being prepped at that moment! I want to be with my son! He needs me. How could this happen?! What bad timing!
I soon endured hours of torture that entailed, but was not limited to; magnesium sulfate drip, starvation and denial of water. I was poked and prodded for IV lines. And the most fun of all, I was subjected to a catheter.The doctor came to tell me that they were going to move me out of Urgent Care. I was moved to a new room on the maternity floor. There, I waited for hours to find out if I was to have an emergency c-section. I hoped that they would put me on hospital bed rest. I prayed that they would let me wait to have the baby on my scheduled c-section, three weeks away. My hopes were dashed when the doctor came in to tell me that they had scheduled my c-section at 11:00 the next morning. No ands, ifs, or buts about it. And I needed to prepare myself for a possible hysterectomy. Fabulous.
I called my husband for an update on our son. It had been decided that the doctors would post pone his operation until 11:00 the next morning. The exact same time that I was to give birth. They had given Sirius morphine for the pain, and he was asleep for the time being. Morphine. My three year old son needed a full blown morphine drip for his pain. I had been giving him Tylenol & Motrin and thinking he might have been faking. I officially felt like an asshole. I couldn't even be there to comfort him.
It occurred to me that this situation was way beyond my control. My only options were to leave the situation to God, pray, and focus upon the task at hand.
On September 24th, 2013 at 1:13 PM, my son Corvus Asher Clark came into this world blue and not breathing. I remember, it took five minutes for my third child to take his first breath. I heard him cry like a kitten. He was quickly presented to me so I would be able to see his little face. I kissed him. I watched the doctors place my baby into the incubator. I finally could breathe. Corvus Asher was whisked away in the incubator and delivered to the neonatal intensive care unit. He was 34 weeks plus 3 days gestational age. He weighed 5lbs 3 ozs and was 17 inches long.
Immediately, the doctors attempted to detach my placenta from my uterus and cervix. It seemed as if it was going to come off cleanly. Alas, it did not. My complete placenta previa / accreta would not allow it to happen. They told me that it was time now to go to sleep. And that's what I did. I slept for another 5 hours while they carved my placenta, uterus, and cervix from my body.
My son Sirius had to have a total of three operations on his left tibia to flush out the infection. He had what is known as MRSA. MRSA is an antibiotic resistant staff infection. Very heinous stuff. He was in the hospital for a total of three and a half weeks. They released him with a PICC line. He sported that for and additional eight weeks. By the grace of the Lord, he's healthy now. You can't even tell he was ever sick.
Corvus Asher had to wear a cpap to help him breathe for three days. He had jaundice. He had to stay in NICU for 13 days total. Even though he was preterm, and he did not breathe for the first five minutes of his life, there is absolutely nothing wrong with him. He is as perfect as any baby could be.
I was released from the hospital first, out of the three of us, after six days. I did not have time to nurture myself and heal. I ran on overdrive. I had two boys in the hospital, at the same time. I had a daughter and husband to care for. I had to put all my focus upon their healing. And they did heal. I healed too. Other than a nasty vertical scar that goes from my belly button towards my nether region, and having to have two pints of blood transfusion, I feel absolutely no damage from the experience.
Pertaining to my uterus, it's strange knowing that part of your body is dead. Never to be alive again. I thought that it might have been a decent gesture to give my dead uterus back to me. I could've built a little cedar coffin so that I may bury it in my back yard. Do a service over it. Plant a tree, possibly. Is that's too macabre? Maybe. But it's too late. My uterus is gone forever. I wonder what they did with it. Did they burn it? Did it go over to the college for the medical students to study? Did they trash it? My poor wrecked uterus sitting at the bottom of a trash can. I shudder to think of it.
I'm OK with not having a uterus. My son is alive. Both my sons are alive. For this, I am truly grateful. Asher is quite the consolation prize. The whole experience feels strangely surreal. But I don't morn my uterus being gone as much as I thought I would. I was afraid that having a hysterectomy would kill my love life. Thank goodness, that did not come to fruition. I will never have a period again. Who wants a monthly bloody mess anyway? I will never be able to be fertile again. I have three children. When my youngest is 18, I will be 55. It's OK. I'm done having babies. I accept it.
So, what is to be learned from this experience? I guess the main thing that I learned was when everything is absolutely crazy, you have no control over the situation, it is the utmost importance to have faith. You must give your troubles to your higher power and pray, breathe, and keep focused upon the task at hand. If you do that, things should work out the way that they are meant to be. Even if that means you must loose an organ in the process. Life will carry on.