CLIMB

Christopher & Michael


When my son Kenny was 9 months old I got pregnant for the third time (I had miscarried my first pregnancy), and my husband and I were ecstatic. We definitely wanted another child and I felt I was ready to be pregnant again. I had one “scare” early in the pregnancy (severe abdominal pain caused by a cyst on my ovary) which brought back flashbacks of my miscarriage, but an ultrasound at 6 weeks’ gestation confirmed a viable pregnancy in my uterus and we even saw a heartbeat so my fears were laid to rest. I had another ultrasound a week later to confirm the due date since my menstrual cycles were abnormally long (40-45 days). That scan confirmed a normal 7-week gestation pregnancy with two yolk sacs but only one viable pregnancy. My doctor told me that it might mean that my pregnancy had started out as twins, but there was definitely only one embryo now.

I didn’t think much of it, and my pregnancy continued healthy and uneventful until my fourth month when my stomach seemed to be getting unusually large for my stage of pregnancy. At first I figured it must be because this was my second child, and I had been warned by fellow second-time mothers that the muscles are much looser the second time around and therefore expand easier and sooner. But when other people started noticing and making comments like, “Are you sure you’re only having one?” or “Are you sure you’re not due sooner?” I became anxious for my next doctor visit when I would have the opportunity to get the doctor’s opinion as to whether my growth was normal or not.

Two days before my doctor’s appointment I was scheduled for a routine ultrasound at 20-1/2 weeks. We were excited to find out whether the baby was a boy or a girl, and deep down I wanted also to see for myself that I wasn’t carrying twins. Almost immediately we learned that it was a boy, but it was also obvious that there was more than one baby in my uterus. When I asked, “Is there only one?” the technician responded, “There’s only one viable baby.” She also said I had some extra amniotic fluid which made my stomach larger than normal. I didn’t ask any more questions, because I could tell that the technician wouldn’t answer them anyway. After the scan, she suggested that I talk to my doctor right away since the scan showed something “unusual”. My doctor’s associate (mine was not in) told us that I did have a twin pregnancy, but that one baby was not living. She apologized for being the one to tell us of the loss of one of our babies. She also said that I had mild polyhydramnios (excess amniotic fluid) and that the non-viable baby apparently had continued to grow which was unusual. She wanted me to see a perinatologist to confirm the ultrasound findings and also to co-manage the pregnancy with my OB since it was a twin pregnancy.

At this point I was handling the news that we had lost one baby pretty well since I had never really had a chance to expect that I would have twins. But when the doctor suggested that I see the perinatologist that same day, I began to get concerned. We got an appointment that afternoon at the Perinatal Diagnostic Center at Stanford Hospital. There they did another scan with very sophisticated equipment. It wasn’t very long before there were three doctors, a technician, and a genetics counselor in the room and I knew something was wrong. They were focusing in on the non-viable baby’s umbilical cord and using the ultrasound’s Doppler capabilities to look at blood flow through the cord. The technician apologized for not telling us what was going on, but said that they wanted to collect all the information first. So we waited patiently till they finished, and then met with the genetics counselor to discuss the findings.

It turned out that the baby which we had been told was not living was, in fact, living, growing tissue, but that it did not have a heart or a brain, and would never survive outside the uterus. The reason it was still growing was because it was being supplied with blood from the other (normal) baby. The two babies’ vascular systems were connected through the placenta, and the normal baby’s heart was, in fact, pumping for both twins. I had a monoamniotic (same sac) identical twin (boys) pregnancy with a condition known as Twin Reversed Arterial Perfusion (TRAP) sequence. TRAP sequence occurs in only 1 out of every 35,000 pregnancies!

I was still okay with this news until we were told of the risks which this presented for the normal baby, which included very premature delivery, heart failure, and umbilical cord entanglement. Then the bombshell was dropped – we were given the prognosis for the normal baby – 50% mortality rate. At this point my tears began to flow as I realized that I had two live babies inside of me, but not both, possibly none, would survive.

Next we began talking to the perinatologist about our options which were 1) terminate the pregnancy, 2) continue the pregnancy with close monitoring and deliver the babies (anytime after 24 weeks) if the normal one shows any sign of cardiac distress, or 3) pursue experimental treatment to either eliminate or disconnect the abnormal baby from its normal twin. They also recommended a genetic amniocentesis to rule out chromosomal abnormalities. We had the amniocentesis performed the following day, and during the amnio they looked again at the normal baby with close scrutiny and could not find any physical abnormalities. They also withdrew some extra fluid since I had polyhydramnios. This made my stomach a little smaller, and I felt a little more comfortable.

While waiting the two weeks for the amnio results we began exploring the option of experimental treatments. We had decided that if the amnio results were normal, we definitely wanted to continue the pregnancy and do anything possible to improve the normal baby’s chance of survival. Coincidentally, the day after my amnio a news story hit the national wire about a doctor in Detroit, Michigan, who had performed experimental laparoscopic surgery on a pregnant woman with TRAP sequence. The surgery was successful, and the woman had delivered a healthy baby boy at 36 weeks’ gestation.

Two days after the amnio I saw my regular OB for the first time since I was diagnosed with TRAP sequence. My stomach was already back to the size it was before my amnio (and then some), and my doctor was surprised at how big I was. My fundal measurement was 34 cm (equivalent to 34 weeks’ gestation, even though I was only 21 weeks), and my doctor said she wanted to see me every week to check my cervix for signs of premature labor. She mentioned the doctor in Detroit and said that our perinatologist would be discussing his procedure with us.

During the next week my husband and I read every medical article we could find on TRAP sequence as well as the article which the Detroit doctor had just published in the New England Journal of Medicine describing the case that had just been in the news. His procedure involved entering the uterus with a laparoscope and using tiny instruments to tie off the umbilical cord to the abnormal baby. This would stop the blood flow to the abnormal baby, which would allow the normal baby’s heart to pump just for one instead of two. This procedure would be less risky to me and the baby since it was less invasive than other experimental procedures which had been attempted, but it had only been performed a total of three times (with two successes) by only one doctor (in Detroit-we are in California). There really was not enough information to give us any type of statistics for risks or prognosis. There was also a local, renowned laparoscopic surgeon at Stanford Hospital who said he would be willing to perform the same procedure on me. He was very confident that he could perform it successfully, but forewarned me that I would be his first case. Also, though he was very experienced with laparoscopic surgery, he was not an OB and did not have a lot of surgical experience with pregnant women.

Over the next week I continued working (between doctor visits and ultrasounds), and my stomach continued to get bigger and bigger and more and more uncomfortable. They performed an echocardiogram (with ultrasound) on the normal baby to check his heart and found everything perfectly normal. We got in touch with the Detroit doctor, and he said he could perform the umbilical cord ligation on me if I could travel to Detroit. We really didn’t want to go to Detroit because it meant both my husband and I would be away from my one-year-old son for at least six days, possibly longer if the surgery caused me to go into premature labor, which was a definite possibility. But we also wanted to do what would be best for the baby’s chances, so after much deliberation and consults with several doctors and perinatologists, we decided to go to Detroit.

She tied up loose ends at work on a Saturday in preparation for a flight to Detroit the next day and an appointment with the doctor on Monday. While packing she went into labor that the doctors determined was too advanced to stop with any amount of drugs. The pediatricians were alerted but she and her husband were forewarned that the normal twin had little chance of survival at this age.

By this point I was in very active labor, and I told the doctor if I had to deliver, I at least wanted an epidural for pain relief. So the anesthesiologist was called. He had just gotten the catheter inserted for the epidural (but hadn’t actually given me any medication yet) when I felt the babies coming so he stopped, I leaned back on the bed, and instantaneously both babies were born; first the abnormal twin, immediately followed by Christopher Michael and a ton of amniotic fluid. Both babies were whisked away to the NICU, but I saw Christopher as they carried him off. He was tiny (1 lb., 5 oz.), but perfectly formed, and his little arms and legs were stretched upward in the air. He was definitely very alive.

Per my request, my regular OB had joined her associate just before I delivered, so they were both tending to me. They had some trouble delivering the placenta, so they decided to do a D&C. Still unmedicated, I asked them to finish administering the epidural before doing the D&C. Meanwhile, the pediatricians came back to tell us that, as expected, the abnormal twin had died at birth. Christopher’s heart was beating, but they said they could not do much for him except keep him warm and monitor his heart. They asked if we wanted to see him, and I said yes. They brought him to us wrapped in a blanket and wearing a miniature gown, diaper, and hat. His eyes were closed, and he looked very peaceful. My husband and I told him that we loved him, and we cried as we held him. After we had had our time with him, they took him back to NICU. About an hour later, they came back to tell us that, as expected, his heart had stopped beating. He had lived about two hours. They asked us if we wanted to see him again, and at first I said no, thinking I only wanted to have seen him alive, but then I quickly changed my mind and said yes. So again we had our private moment with Christopher, cried again, and said goodbye to him, telling him that someday we would be together again.

It has now been almost five months since Christopher and his twin brother were born. Ever since that day I have wanted desperately to be pregnant again, but it hasn’t happened yet. I returned to work eight weeks after my delivery, but I can’t concentrate on my job. I really want to be home with my 18 mo.-old son, whom I appreciate more than ever now. I’m getting counseling and participating in a support group, and my husband and family are being very supportive. But as most of you who will read this know, that doesn’t make it much easier. I keep finding myself wishing I could skip over this period of my life and have a baby in my arms once again. I always find comfort in talking to others who have experienced similar losses, but the more I hear about, the more I also fear my next pregnancy.

Anne

…As her update, she writes:

“Christopher and his twin Michael (named about a year later) were born and died on March 6, 1994. My husband Peter and I now have three living children: two boys, Kenny (7) and Corey (5), and a girl, Kelsey (2-1/2), in addition to our two little boys in heaven. I feel very blessed to have three healthy children, but it has not come without some struggle, both past and present. With both my subsequent pregnancies I went into premature labor at 26 weeks and spent the next 9 weeks on bed rest, in and out of the hospital, and on nasty tocolytic drugs. About a year after my youngest child, Kelsey (the girl I had hoped and prayed for) was born, I felt very, very blessed to have three healthy beautiful children and a wonderful husband, but I also found myself really, really unhappy, moody, less patient with my children, and frequently crying. I began to feel like a hypocrite; how could I dare to feel so lousy when I had been SO fortunate to eventually get the children I so desperately wanted? It turned out that I was diagnosed with clinical depression. My doctor says that the depression could have just coincidentally developed as I reached my mid-30’s, or it could have developed at the time I lost the twins (I was in therapy after my loss but stopped as soon as I got pregnant again), or it could have been present most of my life and only been triggered recently. I only mention this because if there are some other CLIMB parents in my situation I want to make sure that you: 1) know that you are not alone, and 2) seek help from a qualified doctor if you haven’t already. A huge amount of my anxiety was lifted as soon as I realized what depression was and that I had it. Although I have my ups and downs, I am doing much better now that I am on medication and in therapy with a wonderful doctor.”