Tuesday, April 4, 2017

Please send your MoMo Stories!

Dear Monoamniotic Monochorionic Families,

We haven't been very active on this site but success stories meant so much to us while we were expecting.  We'd like to update the blog with some recent stories.  If you want to share your success story please email us at monoamniotictwinmoms@gmail.com and we will be happy to share it!  Email your story as well as a picture (or a few pictures) if you want to share your beautiful MoMos!

Monoamniotic Twin Moms

Oh my goodness, Twins!!! (August 2015)

     I was about 20 weeks pregnant when I went to my first pregnancy appointment with my OB.  Since this was my sixth pregnancy, I felt like I knew what to expect, so didn’t feel the need to make any appointments earlier in the pregnancy.  My doctor joked with me about my being too busy to bother with appointments, since I work full time.  I complained to her about my new health insurance, which had a high deductible, so she commented that we’ll have to make sure this is a vaginal delivery (cheaper than a c-section), and I remember thinking, “Of course it will be vaginal, all of my others were...”  Then she started doing the ultrasound scan, and she turned to me and said, “There’s two”, and I responded, “You’re joking, right?”, thinking that she was teasing me.  She turned the monitor to me so I could see the two fetuses, at which point I said “But, twins don’t run in my family”.  “They’re identical; it’s not genetic, just chance” was her reply.  I was so surprised, I think I said “But it should be genetic!”  As my doctor kept scanning, her entire demeanor changed from the light, friendly attitude, to a very serious one.  She told me that she didn’t see a dividing membrane, but at that point, I really had no idea what the implications of that were.  She hurried me out of her room and called a maternal fetal specialist for me, and got me an appointment the next day for the 20 week detailed anatomy scan.

     I went to the anatomy scan blissfully unaware of the high risks of my pregnancy.  After a long appointment, during which both fetuses were scanned very carefully and were thank God found to healthy and defect-free, the doctor came in and explained in a very matter-of-fact manner that my twins were monochorionic monoamniotic, which is high risk for cord entanglement that can lead to fetal death, and if one twin dies in utero, that frequently causes brain damage to the other twin.  He told me there is no treatment or “fix”, we just monitor weekly until ~28 weeks, at which point in-patient monitoring is recommended, and that delivery is via c-section between 32-34 weeks.  I remember my head was kind of in a whirl after the appointment.  I went out to my car, called my husband, and told him the whole thing.  Then, wanting to share with someone else, but not yet ready to freak out my mother, I called my friend, who happens to be a nurse.  We talked, and I was feeling a little better, until I checked out a link that she had emailed to me, which quoted a 40-50% fetal mortality rate.  That’s when I remember that it really hit me, “Oh my goodness, my babies can really die in utero at any second!”  I spent the rest of the day, although I was at work, googling monoamniotic twins.  I also read a lot of case studies and articles published in medical journals, since I have access to those via my workplace.

     For the next eight weeks, I went to weekly ultrasounds, praying each time that the babies would be alive.  At 28 weeks, I checked in to the hospital for in patient fetal heart rate monitoring.  It was really weird checking in to the hospital, since I felt totally healthy, and wasn’t in labor, so it felt wrong to be in a hospital.  But I kept reminding myself that this isn’t for me, it’s for the babies.  Initially, I was on intermittent monitoring for one hour, three times a day.  Every evening I would pray that my babies would survive through the night, and every morning, when the heart beats were found on the monitor, I would thank God that they were alive.  I also had weekly ultrasounds in the hospital, and got steroid shots when I first arrived.

     Although it was much more comfortable to be monitored only three times a day for one hour, I didn’t completely understand how that would help if the babies were in distress at some off-monitor time, and I had lengthy discussions with my OB and the specialists about whether cord knotting is sudden, or are there detectable signs of fetal distress prior to something catastrophic.  The difficulty is that since monoamniotic twins are so rare, there’s just not a lot of data.  Also, my specialist group had three doctors, and each had a slightly different opinion, which added to my confusion.  One felt that the way the cords were tangled in my particular case, which was a big ball, not a long twisted braid, was actually more favorable, and he felt one hour 3x a day was sufficient.  Another doctor felt, the more monitoring the better.  I actually found out that my friend’s cousin had monoamniotic twins a few years ago, and I spoke to her to hear her experience.  She was in a top hospital in NY, with a top doctor, and she was monitored basically 24/7, with only 5 minute breaks here and there for bathroom, etc.  Hearing that actually made me more nervous, since it seemed like my monitoring protocol was too lax relative to that!  In the end, my OB and I settled on as much monitoring as I could tolerate, with freedom to unplug whenever I wanted, for however long, and no monitoring at night.  I kept myself busy with lots of reading, talking on the phone, surfing the web, and praying.
It was really hard being in the hospital away from my husband and kids, and I missed them terribly, especially at nights.  They came twice a week to visit, but when they left, it exacerbated the loneliness.  They would call me every evening, and I would read them a bedtime story that I found online.  That was my virtual parenting, and I even told the nurses that I coined a new term “teleparenting”.

     After I passed the 29, then 30 week mark uneventfully, thank God, I started pressuring my OB about a decision as to whether to deliver at 32 or 34 weeks.  She wanted a wait and see approach, but I’m very goal oriented, and needed a date to look forward to.  My OB pretty much left it up to me, so I asked for a consult with the neonatologist to hear about the difference, both short and long term, between a “32 weeker” and a “34 weeker”.  In the middle of the consult, when I was 31 weeks, Baby B began to have decelerations.   There’s nothing as nerve wracking as hearing from the monitor the sound of your baby’s heart rate drop.  The nurse rushed in, put me on oxygen, rolled me on my side, and was grabbing for the phone to call the attendant OB.  I remember thinking “Oh my, it’s too early, I’m not ready!” and praying to God that my babies stay in a little longer.  After a tense minute or so, Baby B’s hear rate picked back up.  I was put on IV to increase fluid intake, and remained on the monitor the rest of the day.  Thank God, both babies heart rates looked fine for the rest of the entire day, so the decision was made not to deliver.  Based in the discussion with the neonatologist, and after reading whatever relevant journal articles I could find, my OB and I kind of settled on delivery at 33 weeks.

     At 32 weeks, I got another round of steroid shots.  The next day I had an ultrasound, and though the heart rates and blood flow looked OK, both babies appeared to be sleeping, as there was no movement, and no visible chest rise indicating breathing.  We waited about 40 minutes, which is the typical in utero “nap time”, and we prodded and vibrated, but got only minimal movements.  The specialist concluded that since the main risk in my case was cord entanglement, and blood flow and heart rate look good, we don’t need to be concerned.  He mentioned something about steroid shots potentially making the fetuses sleepy, so he dismissed me back to my room.  The heart rate tracings for the rest of the day were in the right range, but had much less variability (rises and falls) than before, which isn’t a good sign.  I went to sleep praying that my babies will be OK.
The next morning, at 32 weeks and 4 days, the specialist turned up in my room with the portable ultrasound machine.  I remember thinking, “Wait, you said yesterday that you weren’t concerned, so why are you here now?”.  He scanned me, and it was much the same as the day before - good heart rates and blood flow, but minor movement and no breathing.  Again, he reached the same conclusion as before, and left.  About an hour later, Baby B had a decel, and I was rolled on my side and put on oxygen.  At this point, my OB was getting worried about the whole situation, and decided that was it, I was being delivered.  I remember thinking “wait, we wanted to get to 33 weeks, it’s still early!”, but I trusted her call.  

     I called my husband and informed him that they wanted to deliver me now.  He didn’t realize that now meant “now”, and by the time he dropped off the kids at various locations, he arrived after the delivery.  Meanwhile, I was prepped for a c-section, given some terrible tasting antacid to drink, since I had eaten lunch (a no-no for anesthesia, but we hadn’t planned on delivering today!), then rushed into the OR for delivery.  Everything was super quick, and within the same minute, doctors delivered two 3 lb. baby girls.  I didn’t hear the babies cry, and wasn’t given the babies to see or hold, so I was a little concerned.  At that point, my husband showed up, and told me that the neonatologists said the babies seemed “stunned” and not very responsive.  Both babies had very low initial APGAR scores (I think 1 and 2), and were put on CPAP right away.  Later, I was wheeled in to the NICU to see them in their isolettes- it was so hard not being able to hold them after the whole stressful pregnancy!

    The next morning, I got the report from the neonatologist, and thank God, both girls had perked up after their first few hours of life, and become more responsive.  At one point during the night, they thought they might have to intubate Baby A, but then she started breathing OK again with the CPAP.  After about 2 days on CPAP, they were switched to room air.  After a head ultrasound at two days of age, I was finally able to “kangaroo” them, though only one at a time.  They stayed in the NICU for only two and a half weeks to learn how to feed and gain weight.  They went home on the same day, weighing approximately 4 lbs.  And they’ve been doing amazing ever since!  Every day, when I look at them, I thank god for my miracle girls!

Wednesday, July 9, 2014

Mya and Lyla's Story

     We found out we were expecting early June. I scheduled a doctor's appointment for the next week hoping to find out how far along I was, that is not all we found out! While getting my first ultrasound the woman played the baby's heartbeat, she kept staring at the screen not saying any words so I asked if that is indeed the heartbeat. She told me yes it is...and here is the other one. I began laughing while my fiancĂ© asked if she was joking or not, she informed us that she does not joke about twins. She kept looking at the screen after we heard each heartbeat and then told us the doctor would want to speak with us.

     The doctor came in and proceeded to tell us that they did not see a membrane dividing the twins and there is a small chance they could be monoamniotic, but majority of the time they are able to find a membrane later on.  I went home to Google "monoamniotic twins" (big mistake) and really scared myself.  All I was able to find is that this occurs in about 1 of every 60,000 twin births and that my babies only have a 50 to 60% chance of survival.  I knew the girls were monoamniotic but Chris kept trying to make me feel better by insisting that they will find a membrane. Our next appointment we were able to find out the gender of our babies but also our last chance to search for that membrane.  I was ecstatic to find out we were having girls but that was quickly trampled when we were ensured that there was no membrane making my pregnancy extremely high risk.

     Our next step was to make a plan because that doctor could not handle such a high risk pregnancy.  After seeing a few doctors, all telling me to not get too attached because there is a 50% chance I will not get to have my girls, I settled on a doctor in Pennsylvania.  We made a plan to go inpatient at 26 weeks  and to be monitored 3x daily for an hour.  Getting to 26 weeks was extremely difficult.  I was skeptical about having a baby shower because I was afraid of my girls not making it. I was afraid to sleep fearing I would wake up and not feel any movement.

     Finally 26 weeks came and I was ready to be admitted. Being inpatient was hard to say the least.  Chris was finishing school so he could not be there as much as he would have liked which was hard for me. I cried every night I was in the hospital, I felt isolated from the world and everyone was going on about their life without me. I especially hated getting my IV switched every other day. One member of my family would visit every day and that was what I would look forward to every day.

     I had one major scare during my late night monitoring where Baby B's heart dropped into the 70s for a few seconds. I was so scared and pushed my call button 100 times. The ultra sound tech came running in and could not find my baby's heartbeat, finally my doctor pushed him out of the way and found it. Words cannot describe my relief.  I was given oxygen and they kept me strapped up all night. Between the straps being so tight, my tears and my fear I did not get one minute of sleep that night. A few weeks went by with no major issues and other than being in a hospital for five weeks I was doing well.

     My doctor gave me the option of delivering at 34 weeks or 32 and I did not want to take any risks so I chose 32. Thanksgiving rolled around and Chris was finally able to stay for a while. November 26, 2013 I was on my last monitoring session of the day when Baby B's heart dropped into the 70s. I was given oxygen and my doctor told me he was just going to keep me on the monitor for a while longer and told the nurse to give me another round of steroids.  Her heart rate went back up but I would not take my eyes off of that screen. Twenty minutes later her heart rate dropped again, this time to the 50's.

     My doctor ran into my room and asked "Can I deliver your babies today?" I was so scared I could not even speak. I looked at Chris and he responded "Let's Go!" Everything after that happened so quickly. I was rushed into a bright room and Chris was told to stay behind. They put me on the operating table and everyone was scrambling around me. My doctor was yelling that the anesthesiologist was taking too long and getting his instruments ready which did not help my nerves, finally it was time to put me under.

Mya and Lyla

     I woke up asking the nurses if my girls were ok and if they had hair, she responded yes to both questions. I was sent to recovery and was dying to meet my angels. When I saw my girls for the first time it was like a dream. My girls, my sweet babies who I had been told might not make it were finally here. Lyla weighed 2lbs 14 oz and Mya was 2lbs 15 oz. Their cords were not only tangled but Lyla's wrapped around Mya's neck. After four days we were finally able to hold Mya and the next day Lyla! I thought being inpatient was hard, but that was nothing compared to leaving without my girls every day which never got easier.

   I visited my girls every day sometimes up to 5 hours a day. The girls spent about 5 weeks in the NICU with only a few minor setbacks. Lyla came home January 11 and Mya the following day. My girls are 6 months old now and are absolutely perfect.  I love them more than I knew I could. I still stare at them in disbelief the same way I did when the night they were born.

Tuesday, July 1, 2014

A Dad's Perspective

The story in the link below is a dad's perspective of a monoamniotic pregnancy that was published on Esquire.com. We just had to share! It's a great read about a mo/mo pregnancy and life after babies come home.

Tuesday, April 22, 2014

Triplets with a Momo Pair

In November 2012 my husband and I decided to try for our second baby. Our daughter McKenna was almost 4 and really wanted a baby brother or sister. She prayed everyday to God to put a baby in my belly. In march 2013 her prayers were answered. We received our positive pregnancy test. I was 4 weeks pregnant and immediately started my prenatal care. McKenna was overjoyed and started praying daily for twin girls. She named the babies she prayed for Mallory and Celery. I had a normal singleton pregnancy besides terrible morning sickness. It was much worse than with McKenna. Maybe we were being blessed with a boy this go around, we thought. 

At 19 weeks we went for our routine ultrasound. I asked McKenna if she wanted a brother or a sister. She replied she was going to have both. Before we began the ultrasound the tech asked if this was our first ultrasound and If we wanted to know the gender. It was our first ultrasound and we were going to have the gender put in an envelope to be revealed later. We started the U/S and the tech immediately stopped and asked again if this were my first ultrasound. I said yes. She then asked if I were taking fertility treatments. My reply "NO. WHY? IS THERE 2?" She responded, no there's 3. McKenna was right she was having a brother and Identical monoamniotic sisters. We were shocked. It's the only way to put it. 

I had no idea what having monoamniotic babies meant. I went home and googled. I was scared to death. My ob told me statistically there probably was a membrane and they would surely find it at my MFM appointment. At 23 weeks I headed to my anatomy scan. Knowing in my heart my girls were momo. It was confirmed that afternoon. That scan also put my son in a high risk category for Down's syndrome and told me one of the girls had a issue where her cerebellum was not formed correctly. I was urged then and there to terminate my girls. To sacrifice them for my son. No way, I loved them, all of them. 2 weeks later I went for another scan. No markers for Down syndrome and my daughters brain looked perfect. By this point I had disconnected from the pregnancy. I didn't believe I would bring any of my babies home. 

I went inpatient at 27 week 2 days. I would have went sooner but my baby B was suffering from IUGR (Intrauterine growth restriction) and wasn't at a viable weight. I checked in to the hospital expecting to deliver at 32 weeks. But at 29 weeks 2 days I had developed preeclampsia. We did our last ultrasound that morning to find out my sweet baby B Marissa was having reverse blood flow. We delivered that afternoon. Mallory and Marissa (no we didn't go with Celery) were born at 3:33 pm and Maddox arrived at 3:35. Sept 9, 2013. The day of their great grandpas birth and their other great grandpas death. Mallory was 2.5 lbs Maddox was 3.5lbs and my tiny Marissa was born with the smallest cord the Drs had ever seen at 1.15lbs. The doctors couldn't believe she was alive. They even cried with me.

 My triplets spent 7, 9, and 11 weeks in the hospital with little hiccups. They were for the most part healthy feeders and growers. Marissa, the last to come home came home, on her due date November 22nd. Today they are healthy, happy 6 month old's reaching all milestones for their adjusted age. They are my miracle babies.

Wednesday, February 12, 2014

Monoamniotic Twin Boys Success Story

      My name is Abby and I delivered mono mono twin boys on November 26 and wanted to share our story.  I found out I was pregnant on Mother's Day 2013 after going through a miscarriage. I went in to see my OB a week later and had an ultrasound to date the pregnancy. At that ultrasound the tech saw one sac, one placenta, and one heart beat, so we assumed there was one baby-little did we know there were actually two, one just hiding behind the other! I continued going to my regular appointments throughout the summer and each time we listened to one heart beat! I thought I was having a normal singleton pregnancy except for the fact that I had such horrendous morning sickness and I was showing much faster than I did with my first son, Jack.

     At 20 weeks I went in for the big ultrasound-my husband and I were so excited to find out if the baby was a boy or a girl! That's when we got the surprise of our lives! And by the look on the ultrasound tech's face so did she! We were actually expecting twin boys! I didn't have a doctors appointment scheduled until the next week so we went home and were shocked, but so happy to learn we'd be adding two more bundles of joy to our family!

     We had a wonderful weekend celebrating and then on Monday, my doctor called and explained that she could not see a membrane in my ultrasound photos and what that means. I was devastated. I made an appointment with a perinatologist and after several more ultrasounds it was confirmed that our boys were definitely monoamniotic. I was so scared, especially having had a miscarriage right before this pregnancy!

     My husband and I met with my new high risk doctor and we decided that I would check in to the hospital at 24 weeks for my inpatient stay. It was unbelievably hard to leave my son who was then 18 months old, but my mom took a family medical leave from the university where she works and took care of him! I was lucky enough that I was able to work from the hospital, which gave me something to do while I was there. I also finished writing my dissertation while inpatient. I have to say that I really learned what amazing people I have in my life during that hospital stay! I didn't go one day without a visitor in 10 weeks and people brought me books, DVDs, and crafts to keep me from going crazy! My sister came up every Friday night and we'd have a slumber party-eat pizza and watch movies! Between my husband and my mom, they got my son up to see me almost every day!

     I was on intermittent monitoring (1 hour out of every 4) with ultrasounds every two weeks right up until the very end. Two days before the boys were born, we finally had some bad tracings on the monitor and I was kept on 24 hour monitoring. It was very scary-twice during the middle of the night doctors and nurses rushed in and rolled me over onto my side. Both times the boys heart rates recovered, thank god! The second time they actually put in an IV and got me into a hospital gown!

     The next night I started having regular contractions. They started getting more painful and were coming every 2 minutes. I called my husband who got my parents over to our house to stay with Jack and he made it to the hospital just in time. Since we were trying to get to 34 weeks and we were 33 weeks and 5 days, the OB didn't see any point to stop my labor and they went ahead and prepped me for my c-section. They wheeled us down to the operating room and they were all so calm-it was very reassuring! Plus, I knew all the doctors and nurses so well by then that they were more like friends than doctors!

     The boys were born within one minute of each other-Henry at 4:57 and Oliver at 4:58 AM and they were 5 pounds 1 ounce and 5 pounds 6 ounces respectively, which I'm told are great weights for that gestational age. Their cords were a mess-they were all braided around each other with one true knot! They did absolutely wonderful! They were off oxygen by the end of the first day and needed no other interventions-they just had to learn to eat and grow. They came home exactly two weeks later. The NICU stay was the hardest part of the entire ordeal-it was very hard to leave the hospital without my babies. Luckily they did so well and we had them home for Christmas! They are such blessings and this has truly been the best holiday season ever!

Friday, May 17, 2013

Rare monoamniotic twins delivered at Packard Hospital

A momo  mom contacted me to say she had been in the news! She wrote this introduction and the news story and pictures are below! (source:  http://www.paloaltoonline.com/news/show_story.php?id=27924)

You're about to embark on a crazy, stressful and oftentimes scary journey with a momo pregnancy. I was inpatient and delivered my twin girls at a very reputable hospital and I was lucky to have wonderful, experienced care. My best advice is to educate yourself and be your own advocate. And remember, you're now part of a very exclusive momo- mommy club! And we are all here to support you!

Palo Alto Online News, Uploaded: Friday, December 14, 2012, 10:34 AM     

Rare monoamniotic twins delivered at Packard Hospital
Kate and Annie Carlson shared same amniotic sac

"A dramatic delivery at Lucile Packard Children's Hospital has saved the lives of twin girls who might not have survived to their first Christmas, the hospital has announced.

Kate and Annie Carlson were born Nov. 7, but they shared the same amniotic sac in their mother's uterus, which is a rare and dangerous condition, hospital officials said.

The twins, who were born to first-time parents Kevin and Allison Carlson of Menlo Park, underwent an emergency cesarean delivery after their umbilical cords had created a knot. The infants were only 30 weeks old, 10 weeks before a full 40-week term.

In normal twin pregnancies, a thin membrane forms to separate the twins; less than 1 percent of U.S. twin pregnancies are monoamniotic. Cord entanglement and compression and resulting blood flow problems kill 20 percent of twins with this diagnosis, hospital officials said.

Allison checked in to Packard in October as an inpatient. With no membrane dividing the twins, Dr. Jane Chueh and her prenatal diagnosis and therapy team balanced the risk of Kate and Annie being born prematurely with the risk of a cord entanglement. Doctors delayed delivery as long as possible to prevent the twins from developing lung disease and other complications associated with prematurity.

The girls were tiny: Kate weighed just 3 pounds and Annie weighed three pounds, two ounces.

"It was a testimony to the skill of the obstetricians to allow the twins to grow in the womb as much as they did, so that their lungs were able to mature," said neonatologist Dr. William Rhine, whose team cared for the twins in the Neonatal Intensive Care Unit.

The twins could soon be released from the hospital and their parents have their room ready at home.

"We're really grateful. Despite the chaos surrounding our delivery and pregnancy, Packard Children's really put us at ease with their experience and expertise, and it's one of the best holiday gifts a family could ever ask for," Kevin said. "

"Kevin and Allison Carlson with their twin daughters, Kate and Annie, at Lucile Packard Children's Hospital. The twin girls were born Nov. 7, but they shared the same amniotic sac in their mother's uterus, which is a rare and dangerous condition, hospital officials said. Photo courtesy of Lucile Packard Children's Hospital."