Mamas on Bedrest: When Twins Share Too Much-TTTS
January 18th, 2012About a week ago one of my mamas on bed rest called to give me an update on her condition. She’s carrying twins and after several weeks of grizzly hyperemsis gravidarum, things have finally settled down-or so she thought. Now at 25 weeks, she is having a Level II Ultrasound to evaluate whether or not her twins have Twin To Twin Transfusion Syndrome or TTTS.
What is Twin to Twin Transfusion Syndrome (TTTS)?
TTTS is a very specific condition that occurs in twins under very specific conditions. According to the Texas Children’s Hospital,
In two-thirds of identical twins, each twin has its own amniotic sac but shares a common placenta. This type of monozygotic (identical) twinning is called monochorionic, diamniotic since there is an inner layer surrounding the amniotic sac of each twin, but there is only one common outer layer (chorion) surrounding both of the sacs.
TTTS occurs in monochorionic, diamniotic twins. In almost all of these pregnancies, the single placenta contains blood vessel connections between the twins. For reasons that are not clear, in 15 percent to 20 percent of monochorionic, diamniotic twins, the blood flow through these blood vessel connections becomes unbalanced, resulting in a condition known as twin-twin transfusion syndrome (TTTS).
In TTTS, the smaller twin (often called the donor twin) does not get enough blood while the larger twin (often called the recipient twin) becomes overloaded with too much blood. In an attempt to reduce its blood volume, the recipient twin will increase the urine it makes. This will eventually result in the twin having a very large bladder on ultrasound, as well as too much amniotic fluid around this twin. At the same time, the donor twin will produce less than the usual amount of urine. The amniotic fluid around the donor twin will become very low or absent.
In some severe cases of TTTS, Twin Reversed Arterial Perfusion (TRAP) sequence occurs. TRAP sequence or acardiac twinning is a very rare problem, occurring in approximately 1% of twins sharing one placenta. One twin is usually structurally completely normal. The other is an abnormal mass of tissue, consisting usually of legs and a lower body, but no upper body, head or heart. Because of the absent heart, the term “acardiac twin” is used to describe this mass. The normal fetus is referred to as the “pump twin” because its heart is used to pump blood to the abnormal mass. The “acardiac twin” has no chance of survival.
When I realized what my mama would be facing, I had to share it here. While the vast majority of twin pregnancies proceed with few complications, i.e. each twin has its own placenta and sac, its a staunch reminder that multiple pregnancies carry their own inherent risks. While Mother Nature in her marvelous wisdom allows for these wondrous births, sometimes things don’t proceed as planned.
Diagnosis and Evaluation of TTTS
So how would a mama know if her babies were having TTTS? Many times mama has no idea at all. Then when she has an ultrasound, the imbalance in amniotic sacs is noted, there is growth retardation in one baby or develpmental abnormalities in one twin. On occasion, mama may notice that she is increasing in girth quickly. This often happens when the “recipient” twin in TTTS is putting out too much urine in an attempt to normalize its fluid volume, so mama’s belly is getting larger more quickly. The Diagnosis of TTTS is made via ultrasound and the severity is determined by the timing in the pregnancy (the earlier it is detected, the more severe it tends to be), the development of the fetuses and the status of the amniotic sacs and placentas. To better determine the severity of TTTS in the twins, doctors at the UCSF Fetal Treatment Center also evaluate the babies hearts via echocardiogram, their kidneys, bladders and arterial blood flow via the umbilical cords.
Treatments for TTTS
Amnioreduction. Amnioreduction is a minimally invasive treatment in which some of the excess amniotic fluid produced by the recipient twin is removed via amniocentesis. While this was at one time the standard treatment for TTTS, it has been replaced by laser treatments that have superior results and birth outcomes for both twins. It is still effective in some lower risk, very specific cases.
Septostomy
In some cases, the imbalance in amniotic fluid levels is balanced by making a small hole in the membrane separating the two fetuses, called a septosomy. With a septosomy, excess fluid from the recipient twin can flow back into the sac of the donor twin who has low amniotic fluid levels. Complications include all the complications associated with amniocentesis (infection, preterm labor and/or premature rupture of membranes), widening or complete rupture of the septosomy in which case both twins would share one sac, subsequent tangling of the fetal umbilical cords, fetal death (s).
Laser Ablation of Placental Blood Vessels
In more advanced stages of TTTS, laser ablation of the blood vessels on the placenta found to communicate between the twins are closed using laser light energy. If done at the appropriate time and on the appropriate blood vessels, Laser ablation can be a curative procedure. According to the Texas Children’s Hospital,
Laser ablation has been shown to result in the survival of at least one twin in 70 percent to 80 percent of cases and both twins in one-third of cases.Should one fetus die after the procedure, the likelihood that the surviving fetus will develop complications is reduced from 35 percent to approximately 7 percent, because the babies are no longer sharing blood vessels between them. In one-third of cases, neither twin will survive.
Selective Cord Coagulation. Unfortunately, some parents are faced with the heartbreaking decision of whether or not to end the life of one twin to save the life of the other. This decision often has to be made in cases where laser ablation is not an option and/or the survival of one twin is questionable at best. By stopping the flow in the cord of the dying twin, the other twin can is protected from any adverse events as a result of the iminent demise of its twin and be given the best chance of survival. Survival of the one remaining fetus can be expected in 85 percent of cases.
Radiofrequency Ablation.
This procedure is usually reserved for TRAP sequence. In this procedure, a specialized needle is passed into the amniotic fluid and then into the body of the acardiac fetus. A special current is then applied to the needle to burn the area around the major blood vessel in the abnormal fetus. This will stop the blood flow and allow the pump twin (normal twin) to no longer have to send blood to the acardiac twin. Complications of infection, premature contractions and premature rupture of the membranes can occur as in any needle procedure. In one series, the risk for premature rupture of the membranes was 8 percent. In this same series, the chance for a successful live birth for the pump twin was 90 percent.
Truly this is overwhelming information and parents faced with TTTS face some unheard of decisions. However, in today’s technological world, there are more treatment options and more opportunities for successful live births. Hopefully, this brief and very simplistic overview of TTTS will help some parents cope with a very difficult situation and make very difficult choices.
Do you have experience with TTTS? Please share your experience with our Mamas on Bedrest in the comments section below or by sending an e-mail to info@mamasonbedrest.com.
More information can be found at The Twin to Twin Transfusion Syndrome Foundation, The UCSF Fetal Treatment Center, The Texas Children’s Hospital Website.
Note: A huge thanks to Ms. Jenya Cassidy for sharing her story about TTTS. Jenya shared an invaluable resource, Dr. Julian De Lia. Dr. De Lia is pioneer in laser surgery treatment for TTTS and has also done extensive research into the nutritional needs of women with high risk pregnancy. Here is his contact information:
TWIN-TO-TWIN TRANSFUSION SYNDROME
“…so that babies and families who are suffering today will live and be happy”
5000 WEST CHAMBERS STREET
MILWAUKEE, WI 53210-1688
414-447-3535
www.tttsmd.org
Mamas on Bedrest: Heartbreak for 3 Mamas
January 16th, 2012
Ever begin reading something that so grosses you out yet you can’t put it down? That is how I felt reading, “Death On Ice” an article in the December 2011/January 2012 issue of Men’s Journal.
According to this well written article by Jeff Tietz, in the Span of 16 weeks last year, the National Hockey League saw 3 of its players-Wade Belak, Rick Rypien and Derek Boogaard-die. Belek and Rypien took their own lives. At this time, it is unsure if Boogard took his own life but with a substance abuse problem and depression, odds are moving in this direction.
These were big guys, “enforcers”, guys paid to go out onto the ice and “beat down” players on the other team in defense of players on their own teams. They played little hockey. Their main task was to “defend” the honor of their teams. But the repeated blows to the head that each man endured likely contributed to his demise. The article describes how each of these men had likely suffered from Chronic Traumatic Encephalopathy (CTE) a brain disease often connected to massive blows to the head and is known to exacerbate if not cause depression, rage, addiction and memory loss.
The article described and showed photos of, often in more detail than I was used to stomaching, gruesome bare knuckled battles between these (off the ice) “gentle giants”, colleagues and friends . The last to lose his life, Derek Boogaard, was a mere 29 years old but holds the dubious distinction of delivering the most devastating blow in hockey history. In a battle with another enforcer from an opposing team, Boogaard delivered a punch of such force that it shattered opponent Todd Fedoruk’s face, shattering his eye orbits, his cheek, jaw and his nose. Plastic surgeons had to reconstruct Fedoruk’s face using titanium plates.
I’m no hockey fan. I’m neither a fan nor a subscriber of . The subject matter made me physically ill as I read it and more than once I felt as though I would throw up. But in the midst of reading about the brutal battles and the sad endings of all of these young men, I couldn’t help but think aboout their mamas.
As I sat there, watching and waiting while the dentist applied sealants to my almost 6 year old son’s molars, I couldn’t help but wonder, did Mrs. Belak, Mrs. Rypien and Mrs. Boogaard ever imagine in their wildest dreams that their darling baby boys’ lives would end in such tragedy? The irony wasn’t lost on me. As I sat there waiting while my son’s dentist applied sealants to his 6 year molars, I swallowed hard when I read that one player had lost 7 teeth during his career in Hockey. When I considered all that I went through to conceive and carry my babies to term, I just can’t fathom them being involved in such brutatlity. Did Mrs. Belak, Mrs. Rypien and Mrs. Boogaard ever imagine?
Mrs. Belak, Mrs. Rypien and Mrs. Boogaard were mamas just like you and me. I don’t know if any of them had difficult pregnancies or were on bed rest, so I don’t know if they endured steroids, repeat ultrasounds and the fear that comes with knowing that you may lose a child that you desperately want. But I am willing to bet that they did all within their power to bring their baby boys into this world. I know that they loved them beyond measure. And I say without hesitation that they nurtured their boys to manhood. Perhaps they nursed them as babies. They changed their diapers, held their hands as they learned to walk, stroked their cheeks when they were sad or ill, kissed boo boos and soothed all the ills of childhood. They may have even been the ones to teach their sons to ice skate; on ponds and rinks in their hometowns, their young sons wobbly and weaving as they learned to balance. I am sure that they were as proud and thrilled as anyone when “their boys” made it into the National Hockey League. What mama doesn’t want her child to live his dreams? But I wonder if their joy turned to dismay and then sheer horror when they realized what their “baby boys” were being asked to do.
As I sat there, looking at my own little boy, my heart just broke for these women. I can’t imagine anyone hitting my son, and not with the force and intensity that these men endured! When I look at my son’s smooth, cherubic face with the scrawly adult teeth growing in and I know that I could kill anyone who even looks at him cross-eyed! I suppose this’ll change as he gets older, but I wonder if these mamas felt that way? And what of Todd Fedoruk’s mama? She must have been horrified when she saw her baby’s shattered, bloodied face.
The National Hockey League is reviewing it’s policies and procedures in light of these deaths . So far, there has been no ruling on the role of “enforcers” and the brain trauma these men endure (let alone the depression, substance abuse and behavioral disorders). But one can’t ignore the fact that the repeated blows that these men’s bodies endure-the brain not withstanding-is brutal and had to have been contributory if not causal to all of their deaths. Boogaard’s family has donated his brain to Boston’s Center for the Study of Traumatic Encephalopathy (CSTE).
Somehow I doubt that will be much comfort to his mama or to Mrs. Belek or to Mrs. Rypien. From all of us here at Mamas on Bedrest & Beyond, our hearts go out to you on the lost of your baby boys.
Additional information on the tragic life and death of Derek Boogaard came from Nick Coleman.
Mamas on Bedrest: Mama’s “Dream Team”
January 12th, 2012As the debate over who is the better provide of peripartum care wages on, I often wonder, has anyone ever stopped to consider what mamas want? What are mamas’ ideas of the “perfect birth scenario?” What would constitute a birth “Dream Team?” I have often contemplated what would have been my dream scenario (not that anyone ever asked me!!)? If I had to do it all over again and could have things organized around what would have served and soothed me, this would have been my “Dream Team”.
AntePartum Doula. For both of my pregnancies, especially my first, I would have loved to have had someone come to my home, perhaps once or twice a week and check on me. One of the main reasons that I was so reluctant to go on bed rest and pushed back against it was because during my first pregnancy, I was completely on my own (my husband travels for work) and for my second, I was on my own with a 3 year old. How nice it would have been to have folks stopping by, helping out around the house and making sure that I had any and all supplies that I needed. Had I been on full bed rest, helping me to be comfortable, helping me to exercise my muscles and providing massage would have also been greatly appreciated.
Birth Doula. I sort of had this my second go round (We flew in my sister and she was a HUGE source of support and relief!!), but the first time, things went south very quickly and both my husband and I could have used some support in the delivery OR. While I was bleeding profusely (don’t know if they classified it as hemorrhaged, but it wasn’t pretty) immediately post partum, to have had someone that I knew and trusted to help me calm down (they had whisked my daughter away and I was a raving maniac!!), someone who could have told me what was going on, someone to convey that I was in great pain and got me the relief that I needed immediately and not 6 hours later would have been great. I think that incessant emesis and screaming should have been a clue, but it didn’t get me any relief, so I am thinking verbal requests might have worked better.
Midwife AND Obstetrician. I think that both should be present! In the case of my daughter, things went south pretty quickly, so the obstetrician would have definitely been in command. But for my second birth, I think it would have been nice to have a trial of labor with a midwife, with an OB standing (very close) by. I had a scheduled c-section at 39 weeks, my cervix was totally closed and I had no hint of labor. While my son was and is totally fine, I think he and I both were strong enough to have “gone the distance” for a VBAC. But I guess hindsight is 20/20. I wonder if I had had a skilled midwife present could I have at least tried labor? Hmmm.
Lactation Consultant. The hospital in which I delivered my daughter (my first delivery) did well with this one and I really liked this lady! The neonatologist was all gunho on giving my daughter formula because she was unable to latch initially and she could not breathe and suck (her O2 saturation would drop into the mid to low 80’s). I refused. I wanted her to have breastmilk, but mine wasn’t in yet. The neonatologist was insisting on formula so that they could measue exactly how much my baby was getting. A very wonderful Lactation consultant arrived and asked, “Why hasn’t this mama been given a breast pump and offered donor breastmilk?” Everyone in the NICU kind of looked at her like, “Curses, foiled again!” but by the end of the day, I had a breast pump and was pumping out small amounts of colostrum and my daughter had a bottle of donor breast milk which was all we needed until my milk came in. This lovely woman also showed me the best ways to help my daughter to latch on so that she didn’t desaturate as much (just into the low 90’s) and her monitors didn’t all sceech and holler when I held her.
Social Support/Discharge Planning. Now I know that some of you reading this will say, “But most hospitals have social workers.” This is true. But neither time I delivered in either hospital (my children were born in two different hospitals) did a social worker come in and see if there was any support that I needed at home, did I have any questions or if I had any concerns. No one gave me any instructions on wound care for my c-section incisions and no one gave me, “If this happens, come back immediately” instructions or anything on the signs and symptoms of post partum depression. Interestingly, a social worker did come into my room when I had my son to offer me Medicare and WIC (foodstamps) papers. (Obviously she hadn’t read my chart and seen that I had private insurance or a well employed husband, but had merely seen “my face” and had made some pretty biases-okay, racist- assumptions. But I’ll leave that discussion for another post!)
Post Partum (Home Doula). I really needed this, especially after my second delivery! While my sister attended my birth, she had to leave the very next day. (I wasn’t even out of the hospital!) I was in the hospital most of the week following my c-section. When I went home, my parents were there, but they had already been there a week and only stayed two more. So at 3 weeks post partum, still sore and achey, I got up, got my 2 little ones ready and drove my parents to the airport. (Husband had already set off on another business trip!) I have to admit, my response timing was off and I really couldn’t adequately feel my feet to drive but I did it. And at 3 weeks post partum, I was on my own with 2 little people. At that time, I didn’t know about doulas and no one suggested one to me. A few friends stopped by, but for the most part, I was on my own. A doula would have been a Godsend! Post partum follow up is the norm in many countries. I truly believe that it needs to be standard of care in the United States!
So this would have been my dream team. This is actually the reality in many countries. Women in many countries receive this type of perinatal care as routine, and it’s covered by (often universal) insurance. Sadly, this level of care isn’t available to everyone in the US, only via private pay, so often women who need it most are least able to afford the assistance. Thankfully many doulas are able to fulfill the intrapartum, post partum and lactation duties, so you really get 3 rolled up into one. But we have a long way to go!
Few practices utilize both Obstetricians and midwives in the US. To me, this is where we really fall short of providing optimum care. The saying, “It takes a village to raise a child” is approriate because while takes a village to raise the child, it really takes a TEAM to bring the child into the world. It is high time that we all realize that no one provider-Obstetrician or Midwife-is better than the other. They have different skill sets, different strengths and mamas need both available to her as she brings her child (ren) into this world. It is high time that this bickering back and forth STOP and we get about the business of caring for the needs-medical, social and otherwise- of mamas and their babies.
Mamas, what is your ideal “Dream Team”? Do you have it? How can we help you get it? Share your comments below and be sure to subscribe to our RSS feed at the top right corner of this webpage.
