Weights measured today

Tricia just got back from her daily ultrasound.  BPP tests were both 8 out of 8.  Today they also estimated the weights of the babies (they only estimate the weight the babies every three weeks).  The donor is now 1 lb. 10 oz. (750 g) and the recipient is now 2 lb. 10 oz (1200 g).  The blood flows of the donor looked slightly better today as well so it looks like no delivery today.

The latest ultrasounds show continuing weakness in the blood flow to our donor baby.  The doctors say this is expected and that the blood flow will continue to weaken over time.  Unfortunately, this is accelerating the time table for delivery from weeks to days.  We are preparing for a delivery this week.  Stay tuned for more details....

First Post

As you may have heard, we have been blessed with identical twin boys.  Sadly they have been diagnosed with Twin to Twin Transfusion Syndrome and the health and well-being of each baby is in jeopardy.  We are very optimistic that we will have two healthy babies, but the doctors have told us there is a measurable chance that we may lose one or both of the babies.  We have started this blog to keep everyone up to date with the status of our pregnancy and of the twins.

Twin to twin transfusion syndrome (TTTS) is an abnormality of the placenta that affects identical twin pregnancies who share a common monochorionic placenta.  The shared placenta contains abnormal blood vessels, which connect the umbilical cords and circulation of the twins.  The common placenta may also be shared unequally by the twins, and one twin may have a share too small to provide the necessary nutrients to grow normally or even survive.  TTTS is pretty rare and only affects about 15% of identical twins that share a placenta.

Depending on the number, type, and direction of the connecting vessels, blood can be transfused disproportionately from one twin (the donor) to the other twin (the recipient).  The transfusion causes the donor twin to have decreased blood volume.  This in turn leads to slower than normal growth than its co-twin, and poor urinary output causing little to no amniotic fluid (the source of most of the amniotic fluid surrounding a baby is its urine).  The recipient twin becomes overloaded with blood.  This excess blood puts a strain on this baby's heart to the point it may develop heart failure, and also causes this baby to have too much amniotic fluid.

Here is a short summary of our pregnancy to date (please excuse my grammar as it is about 1:00 am as I am writing this):

Week 7 - Identical twin pregnancy confirmed via ultrasound.  Twins were classified as monochorionic / diamniotic.  This means the twins share a common placenta but each has their own amniotic sac.

Week 17 - Next ultrasound performed.  Weights of the two babies were 15% different (discordance).

Week 21 - Next ultrasound performed.  Weight of donor (smaller baby) was 10 oz and recipient (larger baby) was 15 oz for 29% discordance.  Amniotic fluid level (the fluid around each baby) of the donor was around 2 cm and of recipient was almost 9 cm.  Normal fluid levels are between 3 to 8 cm so our donor had too little and our recipient had too much.  Doctors made first diagnosis of TTTS.

Week 22 - Amniocentesis reduction performed on recipient - inserting a needle into the amniotic sac of the recipient to remove excess fluid.  The doctor removed 550 ml of amniotic fluid to reduce fluid pocket around recipient from 9 cm down to 5 cm.  The doctor took Tricia out of work for home rest.

Week 24 - Next ultrasound performed.  Weight of donor was 15 oz and recipient was 24 oz for 32% discordance.  Fluid levels around the donor was very low around 1 cm and recipient still between 4-5 cm.  The bladders of each baby were visible - this is a good sign that means each baby is getting enough blood flow and his kidneys are working and producing urine.  Absent end diastolic flow detected in donor's umbilical artery.  This means that the donor's heart is not going through the resting stage of a heartbeat.  This confirms that the donor's blood is not flowing through its umbilical cord as well as it would in a normal pregnancy. 

We were told by our high-risk maternal fetal medicine doctor in Cleveland to travel to Columbus, OH to meet a specialist at Ohio State University Medical Center for a laser surgery consultation (he would use a laser to sever the vascular connections between the twins in the placenta).

The specialist's diagnosis was that we had some form of TTTS in some combination with Intrauterine Growth Restriction (IUGR) of donor baby and/or asymmetric placental sharing.  He suspected unequal placental sharing as a significant factor since the donor's umbilical cord insertion was very near the edge of the placenta while recipient's umbilical cord insertion was almost in the middle of the placenta.  Due to the suspected unequal placental sharing combined with the fact that we were already 24 weeks, he felt that laser surgery was not the right course of treatment.  He immediately admitted Tricia at the Ohio State hospital for complete bed rest with regular monitoring of the babies.  Steroids were given at this time to help the babies lungs develop faster.

Week 25 - Fluid level around donor starting to show small improvement and now in the 1 to 2 cm range.  The bladders of both babies still visible - good sign.  Everything else was stable.  After spending five days in the Ohio State hosital, Tricia was released from Ohio State and we drove directly from Columbus to Cleveland where she was immediately readmitted at University Hospitals in Cleveland.  Hospital bed rest with regular monitoring is still the recommended treatment.  Ultrasounds scheduled twice a week.   The doctors are happy with recipient's condition, as he is not showing many of the symptoms that usually affect a TTTS recipient baby.  The doctors are primarily worried about the donor's health and his limited blood flow.

A Biophysical Profile (BPP) test was performed via ultrasound. The BPP test measures the health of each baby by examining the muscle tone, body movement, breathing movements, and amniotic fluid volume of each baby - both babies scored 8 out of 8!!!  Absent end diastolic flow still present in donor's umbilical artery.

Week 26 – Two BPP tests performed this week- both babies scored 8 out of 8 on both test!  Fluid level around donor was 2+ cm and in recipient was 3+ cm - getting better.  Intermittent reverse flow now detected in donor's umbilical artery.  This means a small amount of blood is leaving the baby's heart, then regurgitating back into the heart.  The doctors have also detected a slight deterioration in the donor's ductus venosus (DV) blood flow.  This is a measure of the baby's internal blood flow near the liver.  This is another sign that the donor's blood flow is becoming more difficult and is now showing in the measurements taken inside the baby.

TODAY - Today is the start of week 27 of our pregnancy.  Where are we?? - it all boils down to a waiting game.  The doctors want to maximize the amount of time the babies stay inside Tricia while monitoring the babies' health each day.  When they feel the one or both of the babies is becoming distressed, they will deliver the babies.  If one of the babies becomes distressed (most likely the donor), it could also hurt the health of the other baby so they will be delivering both babies together.  Each day they stay inside Tricia is another day for them to further develop in the ideal location.  It is very clear that our boys will be delivered prematurely, the question is how premature.  We are also preparing ourselves with that fact that both twins will be spending a significant amount of time in the NICU once they are delivered.

The doctors have told us that getting to week 28 would be the first goal we should hope to reach.  The chance of survival for a baby increases significantly if the baby can reach 28 weeks gestation.  If we can reach 28 weeks, the doctors said 30 weeks would be the next big goal as babies start to have accelerated growth between weeks 28 to 32.  Our very optimistic goal would be 32 weeks.  Normal gestation for single babies is 40 weeks and is about 37 weeks for twins.

Tricia has been a real champ through this whole pregnancy.  For the past three weeks she has been in the hospital on complete bed rest.  This means she must lie on her side all day and night except to get up to use the bathroom.  Lying on her side is supposed to increase blood flow in the placenta.  She has her blood pressure checked several times a day - fortunately her blood pressure has remained very low through the pregnancy.  Every four hours, the nurses come in and monitor the babies' heart rates.  She also is monitored daily for contraction activity.  And she is able to keep a smile on her face everyday - I don't know how she does it.

Please check out the TTTS Foundation at tttsfoundation.org for more information about TTTS.  See link on the right.

Please keep our boys in your prayers... we will provide updates as regularly as we can.

Albie & Tricia