Monday, December 9, 2013

Diary of an Identical Twin Pregnancy, Part III - We have a Problem!

Part I
Part II

Monday, December 2 - At the appointment at Dr. Elliott's office, a sweet tech does an in-depth, high-level abdominal (stomach) ultrasound exam. My husband is unable to come along, because it would mean having to bring all the kids, which I do not want to do. Instead, Isaac comes along, hoping to catch a glimpse of his brothers. My midwife is with another client and isn't able to make it, though she had wanted to.

Dr. Elliott comes into the exam room for a few minutes early on, and he immediately can identify the much-prayed-for membrane on the screen (meaning our babies do NOT share their amniotic sac, which rules out the "monoamniotic" diagnosis I had dreaded). I express my relief, but he is quick to let me know that even after just briefly watching the screen, he is almost certain of TTTS even without receiving the exact measurements yet. The tech spends about 2 hours taking all sorts of measurements, and explaining to me what she is doing all along. Even to my untrained eye, it is obvious that one twin (and his sac) is taking up the vast majority of the uterine cavity. This baby is overly active, while the other twin is hardly active at all, and wedged into my lower left side. It is also obvious that a bladder is not visible on the smaller (donor) baby due to low fluid levels.
After the ultrasound, Dr. E spends about an hour in his office explaining the results, the consequences, treatment options, etc. He is an elderly man that has been seeing nothing but high-risk  pregnancies since before I was born. He doesn't mince words, while being very easy to follow and understand. The situation is grave, and urgent - not in minutes or hours, but in days. The babies have stage II TTTS, with intermittent markers for stage III (stage V is death of one or both babies).

In an nut shell, a baby's cord (two arteries, one vein) goes into the placenta, where the blood vessels branch out like roots on a tree. Because our boys share one placenta, some of their blood vessels have made unfavorable connections. If an arterial branch from one baby connects with an arterial branch of the other, it is not really an issue because the pressure of blood flow from both sides is roughly at an equilibrium. Same with a vein-to-vein connection. Problems arise if an artery from one baby hooks up to a vein of the other. Because arteries are high-pressure, they will bleed out into the low-pressure vein of the other baby. This means the boys' blood cycles are completely connected, with a net loss of blood volume to the "donor" baby, and a net gain to the "recipient."

The condition is very dangerous to both babies. One baby is in danger of dying from severe anemia and dehydration, leading to brain damage and cardiac arrest, while the other baby struggles with an excess of blood volume that is likely to also lead to cardiac arrest and death. Untreated, the chances of the babies surviving are about 5% for one twin, 0% for both.

There are few treatment options available, all of which I am only slightly familiar with. Remember, this is only 12 days after finding out we are having twins - I have much to learn yet. Our three options are expectant management, laser ablation of the connecting vessels between donor and recipient twin, or reduction of amniotic fluid. There are two other options that we will not even consider - terminating the pregnancy altogether, or "selective reduction" of the donor twin.

Dr. E. explains the pros and cons of all three of our options. We are in too urgent of a situation to safely be able to consider watching and waiting (about 15% of cases will resolve on their own over time, presumably due to more favorable blood vessel connections developing).

Laser ablation is his first recommendation, though the procedure is the most invasive of all the available options. He quotes the babies chances of survival as roughly 80% for the recipient, and 20-30% for the donor. We also would have to travel out of state for this - I am told clinics are available in either San Francisco, Dallas, or Houston.

Reduction of amniotic fluid is not really a cure, it more just negates the effects of TTTS. The babies cope with their unfavorable blood volumes by either secreting the excess blood serum into their amniotic sac via their urine (recipient), or holding on to all fluids for dear life to prevent further dehydration (donor). On a side note, as it turns out, Dr. E is the doctor who first thought up and pioneered therapeutic amniocentesis 30 years ago. It has since become one of the few available treatment options. Of all docs to carry this out, he is the safest and most experienced one to go with.

I tell him I will talk the options over with my husband. This information is all coming fast and furious, and mostly unexpected. On the drive home and after getting home, I explain the situation to my husband. He immediately grasps the gravity of the situation. Based on the limited information we have received so far, it seems to us that the amnioreduction is less invasive (it is), and offers better survival rates (it doesn't). We figure it is worth a try. If it doesn't work, I could always move on to the laser treatment next (NOTE: I did not know that most clinics will not carry out laser surgery after amnioreduction). I call the office back immediately to get the soonest possible appointment for therapeutic amnioreduction, the treatment option we are choosing to go with. I get an appointment for two days later, Wednesday afternoon, to be carried out at the hospital.

Next, I call my mother-in-law to ask if she can come out right away, so my husband would be able to go with me to the amnio, and any necessary repeat visits. She flies in late that same night. She is seriously wonderful like that.

12 comments:

  1. Praying continually for you. God will order the steps of you and your husband as you navigate so much information and the decisions to be made. Hold fast to His promises.

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  2. We are praying for you and your babies.

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  3. I am praying for the best possible outcome for you and your precious twin boys. I'm glad you're getting help and please take it easy as you can. I'm waiting to hear how you switched treatments so quickly. I'm glad you did.

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  4. Prayers for you and your sweet boys. I have three month old twin girls (29 weekers) who are NICU graduates. God provided awesome doctors and nurses for our sweet girls and I hope that the same is provided for your dear boys.

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  5. Hallo Zsuzsanna , eine wundervolle nachricht das ihr zwillinge bekommt Gott hat euch sehr gesegnet ich bete fuer deine Schwangerschafft und all deine krankenhaus termine das alles gut laeuft und deine zwillinge gesund auf die welt kommen . Der sei bei euch in dieser schwierigen zeit und er soll euch leiten in euren wichtigen endscheidungen .Gott segne Euch . Liebe Gruesse Anja

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  6. I completely understand what you are going through. I was in your exact same situation 5 years ago with our identical twin boys. When I was diagnosed, I immediately flew to Toronto where they did the laser surgery on my placenta. The surgery was a success and both boys started to grow. I pray all goes well with you, just remember to take it easy, you don't want those babies coming early. I know that is not easy, I also have 7 children and rarely have time to relax.

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  7. I am so sorry to read about the problems you are having with your pregnancy. I'm wondering if you have considered applying for Medicaid. My daughter is a stay at home mom, so they live on just her husband's income, and they have no insurance. When she became pregnant with her third child earlier this year, someone suggested that she apply for Medicaid. She had not even considered that she might be eligible, but she was, and it's a good thing she did. It was a high risk pregnancy with complications. The baby was born 6 weeks early and spent 9 days in the NICU. He is fine now, and we are thankful to the doctors and other medical staff for that. We are also thankful for Medicaid, because this would have wiped them out financially. I have no idea what your family's financial situation is, and it is none of my business, but it wouldn't hurt to check into Medicaid eligibility.

    Anyway, congratulations on your pregnancy. I hope for the best for you and your twins and your other children as well. You will be in my prayers.

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  8. Thank you for taking time to share, I have been praying and will continue to pray for your family and the life of your little ones. To God be the glory.

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  9. Spent many moments in prayer for you today...prayers for peace, rest and good procedure results!

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  10. Praying for the babies and you God Bless

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  11. I was worried something might be wrong when you had gone a few weeks without updating here. I am so glad that it seems you and the babies are both in the best of hands as far as medical care is concerned. I was wondering if this experience had done anything to change your views about the medical "establishment" in general, and/or male OB/GYNs in particular? I agree completely with you that pregnancy is normally not a medical "condition" and that midwifery care is very appropriate in most circumstances, but it seems you were very lucky to have the care of a specialist in your particular case.

    I'll continue to keep you and the babies in my prayers!

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