*Monoamniotic twins are the result of a late splitting egg; one that split around 8-12 days after fertilization
*Monoamniotic twins only occur in 1% of twins
*Monoamniotic twins share a placenta and amniotic sac which means they have skin to skin contact
*Monoamniotic twins are considered extremely high risk because of the risk of cord compression leading to fetal death as a result of umbilical cord entanglement
*Monoamniotic twins are always delivered by C-Section
*Monoamniotic twins are usually delivered between 32-34 weeks gestation because the risks of staying in utero are greater than the risks associated with a premature birth
*75% of monoamniotic twins are girls
*inpatient monitoring at viability yeilds the greatest success rates
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Here is where my journey began...
At my first OB appointment at 8 weeks during a routine ultrasound my OB discovered twins. I was in shock. He mentioned in passing he did not see a membrane and when I inquired if this was cause for concern he tried to ease my mind telling it was but he had never had it happen to a patient ever in his practice. Those odds should have eased my fears but somehow they did not. I went home and read about MOMO twins and stayed up all night with worry. I called my OB is desperation the next day and was given no relief and no assurance. Weeks and days dragged till I could get another check. At 12 weeks I was full of worry they would not even see two babies alive. After confirming they were still there they still could not find a membrane and he mentioned he could not rule out conjoined twins. My ob still told me it was too early to tell anything definitive and I again waited for more days and weeks of agony. Not yet even knowing if my babies were conjoined! At my 17 week scan the ultrasound tech confirmed to me she did not think there was a membrane at all but that she knew they were not conjoined. She was a bit shocked I had not seen a peri and called from her cell phone to get me in to friend the next day. I was so relieved since my OB seemed to be putting me off all the time, like I was worrying over nothing.
At my Peri appointment the nurses seemed confident that they would find the membrane (it was so rare). The world fell from under us when they all confirmed what I felt I already knew, the girls were MOMO. My doctor was full of compassion but his diagnosis was grim and I was horrified. I thought I was prepared for this, hearing the cords were already very tangled, that the babies could be born as early as 25 weeks, that we would we be lucky to get them here at all was truly unbearable!
After consulting this monoamniotic.org I was able to gain some strength and knowledge and with that and my faith in God I could make it each day. I was monitored outpatient once a day from week 24-32 with the understanding I would go inpatient at any sign of trouble. I received dopplers weekly and two separate rounds of steriods (one at 25 weeks one before delivery) Every day seemed ok and the babies were fine, yet it was still agony. Every single day was filled with stress and fear as I never knew if I would find my babies alive at my next appointment! At 32 weeks we all became increasingly nervous with the odds and the gravity of the loss was very real and we delivered. Everyone at my delvery was shocked at the cords and we were told by our peri/MFM that he felt it was a miracle we delivered that day! Hailey and Sydney both came out crying and were wonderful. They both were on a vent for several hours but quickly were off and put on nasal canula. They spent 29 days in the NICU learning to eat and get bigger. Not the easiest time.
They came home without monitors and off oxygen and almost normal, just tiny. They were small. We did RSV shots, and I was able to sucessful nurse for 13 months. The girls have added more joy than I could ever have imagine to our family. Daily I thank God I have them. I appreciate life and their sweet presence so much after going through that horrible pregnancy. They are healthy and chubby and completely normal.
Looking back and knowing how much these babies mean to us and because more current research has been released (The Heyborne study) I am a big advocate of inpatient monitoring. I would demand it. When I delivered my twins it just was not being done routinely. Now with the newest information its being done all the time. My peri (with whom I still keep in touch with) now follows the new protocol. He admits patients between 24-26 and they are monitored 3x a day up to 24 hrs a day till delivery.
All of you recently diagnosed please realize you can survive this and get two miracles. It is full of challenges and trials but you can do it. There is a lot of hope and research out there to help you. I had great success! Please email me or comment. I am happy to help in any way. Reach out to Monoamniotic.org as well. I help (along with Angie) with that site and would be happy to offer support and information. You can also visit my personal blog at http://our-munchkins.blogspot.com/.
We tested positive on a home pregnancy test in early January. This came as a huge surprise as I was on the birth control pill. So, I scheduled an appointment with my OB. When I went in to the office in February I saw a nurse practitioner and she used a Doppler to listen for the heartbeat. After a few minutes of searching she heard it. I sighed with relief. I had two miscarriages and I was worried it would happen again. Anyway, at this appointment I was 9 weeks and thinking I was only having one baby. The NP told me about a study some doctors were doing to determine if a baby had spina bifida through ultrasound. I had to be seen between 10 and 14 weeks and besides that it was free! So I called and got an appointment.
March 7, 2002...We were at 12 weeks when we went in for the ultrasound to the hospital. The office is where my peri practices and we were about to meet him for the first time. We were taken back to an exam room after filling out several forms and a long wait. The ultrasound tech started with the exam. She told us then that we were actually 14 weeks. Since we were only expecting one baby she showed us a head and tummy in one shot. There was a hand in a strange position but I didn’t really think anything of it. She printed out a picture and then right after that she said, “Oh there are two in there.” I looked at my husband and looked back at the screen in disbelief. Then we just started to laugh. I couldn’t believe what I was seeing. Hearing the tech say Baby A and Baby B was almost too much. After she got a few pictures she started to look a little harder and was saying something about a membrane. I knew nothing about twin pregnancies so I always thought twins shared a sac. Looking back I can’t believe how naive I was. The tech excused herself after five to ten minutes and said the doctor would be in soon. We just laughed and laughed after she left. We had two boys already. One that was 3½ and one that was 15 months old. How were twins going to be coming? The doctor entered and started with his exam. He turned to us and said he wasn’t going to talk a whole lot because he was looking for the membrane. After about 5 minutes he turned to us and said something about monoamniotic and a 50% chance of survival. We were just numb and shocked. He told us to go online and get some more information.
We left that day speechless. Jarrod went to work and searched for information. He brought home a bunch of information explaining how it happens and how rare it is. The peri said he wanted to see us again in 4 weeks and that we needed to see my regular OB as soon as possible. We had an appointment scheduled with her two days later. One of the first things she said to us was that our peri had spoken with her and she was going to hand over my complete care to him at 22 weeks. So plans were made for us to be seen every 4 weeks until viability and then we would be discussing further plans once we were closer to that date. This was about the time when I read a post on the web site about a lady who lost both her babies at 16 weeks. I was 18 weeks at the time and I just started believing they were gone. I had convinced myself that I was carrying stillborns and it was really starting to get me down. We went in for our next ultrasound the day after my birthday and the ultrasound tech started the exam by measuring Baby A’s head. I had to stop her and ask if they were okay. I just lay there with my eyes closed waiting to hear the bad news. She moved to Baby A’s heart and said it was beating and then she quickly showed us another beating heart for Baby B. I opened my eyes and took a huge sigh of relief. We just watched in amazement while they measured the girls. They were both healthy and growing well. We saw my regular OB and she said that I would start to feel movement more frequently. What a relief! I no longer felt like I had to expect they were gone as much as I had been before. I made sure I felt something everyday until delivery.
We continued to go on with our daily lives. I tried to focus so much on work and family so I wouldn’t think about the bad stuff. I knew it would be very easy to fall back into the sad thoughts and I just didn’t want to anymore. We counted the days until our next appointment. We had been researching and trying to learn as much about the management strategies as possible. Jarrod knew so much more than I did and was such a rock for me to lean on. I don’t know what I would have done if he hadn’t been as supportive as he was.
Anyway, after seeing our peri for the second time he suggested NSTs three times per week and weekly ultrasounds. We had taken the Rodis study to him and he said he had already seen it and then kind of disregarded it. We left a little discouraged and decided to think it through. With a little help from Nick we decided not to settle for anything less than daily NSTs. So again, we continued counting the days until the next appointment. I made sure I felt the girls move everyday at least once, even though my OB said I wasn’t supposed to feel movement everyday until I was 24 weeks. I really wasn’t going to settle for that. I needed to feel them everyday or I would have lost my sanity.
The next appointment was the planning appointment. This was where Jarrod and I went in thinking, “we are going to make this peri do daily NSTs”. The ultrasound tech took us back and measured the girls. They were growing and moving so much. Then the doctor came in. We were ready. He did his exam and then turned to us and said, “Well, I think we should decide what the plan will be for the duration of the pregnancy. What do you guys want to do?” I looked at Jarrod and he told him, “Daily NSTs.” The peri looked at us and said, “Okay. I think you two have done a lot of research and you know what you want. I’ll walk you over to the Antenatal testing room and introduce you to the nurses.” That was it. No fighting. No negotiating. He introduced us and said that he would try to get them done at home so we didn’t have to drive in everyday. That didn’t end up working out so we came to the hospital everyday. Most of the time it was pretty uneventful. At first the girls would move a lot and they couldn’t get a good strip on them. So office policy stated that anytime a strip wasn’t reactive they would do a BPP. We got BPPs done everyday we went in. I loved it because we got to see the girls everyday. We saw some pretty cool things during the BPPs. Such as, one of them sucking her thumb and we even got to see one of them blink. I just kept thinking about how lucky we were to be able to see these moments because of this condition of the pregnancy. They passed every BPP 8 of 10 each day.
We were first admitted to the hospital for continuous monitoring at 27 weeks. The peri first took us into an exam room to look at the cords. We had discussed steroids at about 30 - 31 weeks. Just one round because he said that he thought more than that could cause more harm than good. While he was looking at the cords he just kept rubbing his head and saying, “It is just too soon.” I was freaking out. There was no way I wanted to deliver yet. He turned to us and said that we needed to stay the night and have continuous monitoring. He walked us over to Labor and Delivery after he decided to give us our first round of steroids. When we got to Labor and Delivery he was explaining to the nurses the nature of the pregnancy and that we needed to be monitored very closely. They were just looking at him as though he was crazy.
After being at the hospital every day for these tests we really could have put the monitors on ourselves, so when our nurse came in and was really struggling it took everything I had to not push her out of the way and do it myself. We had been in the room for about 2 or 3 hours when both of the girls started moving and went off the monitor. They stayed off for about an hour before anyone came in to get them back. She was really having a difficult time finding the girls and just acted like it didn’t really matter anyway. She said, “I just don’t know how he [our peri] expects us to keep these babies on the monitors.” Then she got up and left shrugging her shoulders as she walked out. I looked at Jarrod and said, “Give me that gel.” I got the girls on and held the monitors for over an hour. I was so mad. Needless to say our peri came in the next morning and said that the girls looked fine so we could go home.
That happened five more times over the next five weeks. Sometimes it was only for a couple of hours and sometimes it was for almost 12 hours. Each time we were sent home with reassurance of the girls well being.
We were seeing the peri every other week for ultrasounds and measurements of the girls. During one appointment we actually saw a colleague of his as our peri was in an emergency c-section. He showed us the cords and the placenta. Then, where the membrane would be if there was one. It was pretty neat. By the time our next appointment with our peri came around I was 31 weeks 6 days. We were waiting to be taken back to have our NST when we heard another couple talking about how they were expecting identical twin girls. We just laughed at all the questions they were answering – more out of empathy. Then they said they were monoamniotic. We about fell out of our chairs. We started to talk to them about management plans and what they should expect. Then they were called back. During the NST the peri asked how we were doing and said that he was worried about the cords. He hadn’t seen us in four weeks and was thinking about the cords. He couldn’t believe we were already at 32 weeks. He said that he wanted to see us after we were done. The NST went great and the girls looked good. The other mono couple came by and we talked to them for a while. Then the peri came by and we were taken to an exam room. The girls were measured at 3 lbs. 4 oz and 3 lbs. 11 oz. He took one look at the cords at turned to us with the options we had. He said, “I just don’t have a very good feeling about these girls if we go much longer. I think we need to either admit you for continuous until 34 weeks or deliver…based on what the neonatologists say. I want you to have one more round of steroids while I talk to the NICU.” And with that he left and a nurse came in with the shot. By the time he came back – within five minutes – he was pretty much convinced we needed to deliver. The neonatologists said that if they were 32 weeks and I had already had steroids that there was no question – Deliver. So it was decided that I would be admitted for continuous until I delivered the next day at noon.
I had been working full time taking about 2 ½ hours during work to travel to the hospital to have the NSTs done. So after we got the news about delivering I called work and left a message saying I wasn’t coming back for a while if at all. Jarrod and I just kept laughing and shaking our heads in complete disbelief. I called my sisters to get my two boys from daycare. When they got there and told my oldest, Christian – who was 4 at the time – he turned to Kaden (18 months) and said, “I am going to be a big brother again and so are you!” I laughed pretty hard when I heard that!
That night and the next day were pretty intense. We didn’t get much sleep – partly due to the total lack of comfort from the Labor and Delivery bed, partly from knowing that I would be able to see the miracles that I had been blessed with. I had been working with a lady at work who knew one of the nurses in the NICU where I would be delivering, so she told Denise (our primary NICU nurse) about us. At about 11:00 am she came in to introduce herself and to tell us that she would be taking care of our girls while they were in the NICU. It was very nice to already have a familiar face in a very overwhelming part of the hospital – as we would soon find out.
One of the peri residents came in at about 11:50 am and said that there was another baby that was 25 weeks that needed to be delivered and we would probably need to wait until that baby was delivered before our girls would be delivered. Okay. I think that probably calmed me down more than it freaked me out. Jarrod was given a white jumpsuit that we affectionately called the marshmallow suit. He was also fitted with a blue cap and blue shoe covers. My dad wrote “DAD” on the back of the suit, which all of the nurses and doctors found very amusing. At 12:00 p.m. I was walked down to the operating room and the anesthesiologist started doing his thing. He told me that I would be getting a spinal instead of an epidural. The spinal would numb me from the breasts down instead of the waist down. I had epidurals with both of the boys so I was all about more drugs rather than less! It was honestly five minutes after he started that I felt nothing. A nurse got started on prepping my tummy and I was starting to get nervous. Jarrod was sitting at my head getting instructions about what to do if he got sick. I was given an oxygen mask that smelled so bad I started getting sick. Finally the sheet went up in front of my face and I closed my eyes. I was so tired and just wanted to go to sleep. The peri came in and they started. He was not exactly excited about the musical selection that was being played and made the nurses turn it off. Then he went to work. Pretty soon I heard, “There’s Baby A.” Jarrod turned to me and said, “She’s out, babe.” We had the names picked based on birth order so all I kept being concerned about was the names getting mixed up. Silly, I know! Then, “Baby B is here.” The doctor kept saying how beautiful they were. I was smiling so much but I could not open my eyes still!
When the knot came out the antenatal nurse we had asked to be in the delivery had taken our digital camera and was taking a bunch of pictures. The peri said, “Oh, I am so glad you brought a camera!” He was trying to speak Spanish the whole time and was joking with all of the nurses in the delivery room, so it was a very light atmosphere. I was then given a tubal and put back together. When I was wheeled to my room the time on the clock read 1:05 p.m. That was fast, I thought. It was then I found out the girls were born at 12:33 and 12:34 p.m. The peri came to get Jarrod to go see the girls. When he came back he said the NICU was crazy. There were people everywhere, but when our doctor walked in it was as though he had parted the Red Sea. He told me that Brooklyn (Baby A) weighed 3 lbs. 2 oz and Barrett (Baby B) weighed 3 lbs. 1 oz. I couldn’t believe how close in weight they were. They were not on a vent, but had nasal prongs for their oxygen needs. Because of the 25 weeker being delivered and then being transferred to the Children’s Hospital I was not allowed to go to the NICU until about 5:30 p.m. I was wheeled down and was so sick from the spinal I threw up right when we got there. There was no way I was leaving so I sucked it up and was wheeled over to Brooklyn. She was so little and had so much hair! I started to get sick again and threw up. The neonatologists told me to go back to my room and rest. So back I went. I hadn’t even seen Barrett. I stayed in my room until about 10:00 am the next day. At about 5:00 am a nurse practitioner came to my room and told us that the girls oxygen needs had increased so much that they had to be intubated. That kind of bummed us out, but we were strong for them.
During my stay in the hospital the girls stayed on the vents and had two blood transfusions. So much actually happened on the day of and the day after their births. They both had arterial lines and feeding tubes put in on the 12th of July as well as their IV fluids – also known as hyperal. The doctors decided to give them doses of surfactant to possibly help with the vents. This didn’t help in the long run because of a problem with a vent in their hearts that didn’t close as it usually does in term babies. This is called a PDA. This usually can be closed with medicine (Decadron) and in the more serious cases a small surgery to clamp the vent shut if the medicine doesn’t work. Both girls’ vents closed after three doses - 12 hours apart from each other – of the medicine. Thank goodness! That worried everyone quite a bit. They pretty much did everything on the same day from then on. The only exception to that is when Barrett was put back on the vent after being off it for one day. (They were both on the vents for the first time for seven days.) Barrett was then re-extubated four days later and put under an oxyhood. That was gone the next day, but the nasal prongs were put on. They both stayed on the oxygen for good until the 26th of August. Only four days before going home. After Barrett’s second vent experience, it was pretty boring. Just waiting for them to nurse and learn how to suck, swallow, breath. That took them a little while, but once they got the hang of breast-feeding they loved it. They were and actually still are the slowest breast feeders in the world. They must love to hold mom!
After seven weeks and 1 day in the NICU both of our girls came home together. It was so nice to have them come home on the same day…I don’t know how I would have done it if it wasn’t that way. Barrett was still having some brady spells about a week before discharge so she had to come home on a monitor. She also came home on Reglan and Zantac for reflux. That was an interesting experience for me! I had to give the meds during the middle of the night and actually gave it to Brooklyn once! We went in to the doctor’s office on Tuesday (they went home on a Friday) and he stopped the meds. I absolutely hated the monitor. It was set way too low for the heart rate so while I was getting bottles ready she would get mad and the monitor would alarm. We went back to the doctor that Thursday – to see if they were gaining weight – and I expressed my feelings about the monitor. He told me that we could discontinue using it, which made me so glad. It came off in the doctor’s office.
Ever since they have been doing great.
We are so grateful to have been chosen to be the parents of such amazing babies. What a miracle life is…You can check out Brittney's blog at http://jarrodandbritt.blogspot.com/2008/04/day-15.html