Sebastian & Kieran by Caroline - USA

A Laser Surgery Success Story - Sebastian and Kieran

What a huge and wonderful surprise it was when we were diagnosed at 9 weeks in December 2000 with twins. I had always wanted twins and couldn’t believe we had been blessed with twins. We were over the moon. We have a 4 year old daughter, Siena and 3 year old son, Maximilian so twins was such a blessing. My obstetrician did a scan, found a membrane but did not tell us if they were identical or fraternal at the time.

At my 13 week check up the question of amniocentesis arose as I was 35. We decided against it. My obstetrician said he would schedule the next scan for 21-22 weeks. He said there was not much difference in care from a singleton pregnancy until 6 months when I would be sent for monthly scans. How wrong he was! However in a twist of fate, his contract with my insurance company was not renewed so I had to find a new obstetrician.

I saw my new obstetrician at my 17 week appointment and the question of amniocentesis arose again. He recommended that we go for a level 2 ultrasound and if the perinatologist saw anything suspicious we could go ahead and do an amniocentesis. That sounded fine so we booked a scan for 18 weeks. It was odd but I was nervous rather than excited before this scan.

On Tuesday, 20 February 2001 we went for our scan. We told our perinatologist that we didn't want to know the sexes. He started scanning round and round my belly for 2 to 3 minutes not saying a word. Being none the wiser I thought it was his way of doing things. He then said I know you don't want to know the sexes but I need to know. Okay. Then he wrote the word "Shrink-wrap" on the screen and told us that there was a very serious problem. I remember the panic and my heart racing.

We had twin-twin transfusion syndrome (TTTS) and we were in Stage 2 (our donor had less than 2cm of fluid and was stuck - hence shrink-wrapped with no visible bladder and our recipient had 7.4 cm of fluid, a huge bladder and the start of abnormal dopplers). We had never heard of TTTS. We were devastated but we had no real idea of how vast and serious the problem was and how many complications can occur. We were horrified to hear that without any treatment there was almost a 100% chance they would both die. I remember so clearly the ultrasound images of our babies – one in a huge amount of fluid with this enormous bladder and my donor so shrink-wrapped he couldn’t move his arms or legs.

Our perinatologist told us about our options and the prognosis with each one. He told us that he had sent a few patients to Dr. Quintero for laser surgery and they had had good results. He recommended laser surgery in our case but left the decision to us. Now we had to make a decision about our babies’ fate in a few hours with very little information. We decided we would go to Florida to be evaluated there and then make a decision. He telephoned Dr. Quintero there and then, faxed him all our info and we were left the next day for Florida with surgery scheduled possibly for Thursday.

What a roller coaster of emotions. I have never cried so hard, felt so helpless and scared. To be blessed with twins only to have them taken away. We had no time to read up on anything and all I kept praying was to do the right thing for my babies. I just wanted to give them the best chance possible and after that it was in God’s hands.

We left for Florida and met the wonderful team at St. Joseph’s Hospital. Dr. Quintero said we didn't meet the criteria for laser surgery as our recipient's fluid level was not > 8cm. It was at 7.9cm so he recommended we have another scan in a week. In a way we were relieved as we hadn't had time to digest and read up on everything but once back home, I got onto the internet and realized that laser surgery treated the condition rather than just the symptoms. That weekend was the longest weekend. I wanted to be proactive doing something to help them but instead it was a waiting game. I had a feeling things were not getting better and then on Monday Mary Allen called me and told us not to wait until Thursday but to go the next day (Tuesday) for our scan. Dr. Quintero had been worried about us over the weekend and wanted us scanned sooner.

The next day our fluid level was at 9.1cm so back to Florida we flew. I had surgery at 19 weeks and Dr. Quintero lasered 4 vessels. I remember waking up and hearing him say that it went very well. I needed no pain medication or medication for contractions. All went very well and the care was fantastic. The next day we saw 2 heartbeats, a small amount of fluid round our donor and a tiny bladder. What total joy. We were cautiously optimistic and by the second week our donor was completely unstuck and the fluid levels equal. Our perinatologist said “Wow look at your donor move!” as he somersaulted across the screen.

All went well until 25 weeks when our perinatologist noted that our recipient's head was very low. My cervix had started to funnel and shorten and he said normally we would send you to labor and delivery but you need to go onto total bed rest. Let’s try and get to 29 weeks. I was so scared – to have come this far and now to possibly deliver so early was so frightening. A mad rush ensued putting my children into daycare and to bed I went. After 4 weeks of my poor husband running the show, my mother came over from South Africa to help.

My bed rest became more enjoyable and I read plenty, slept and enjoyed every movement my babies made. The highlight of my week was going to see my perinatologist and see our two babies growing and moving. All the signs of TTTS resolved quickly following surgery, however we knew we weren’t out of the woods until they were safely in our arms. My cervix held firm and at 32 weeks they stopped scanning my cervix as they would not stop labor at this point. After 12 weeks of bed rest, I reached my scheduled caesarian section date of 37.2 weeks. My perinatologist told us at my last scan that he had not expected me to make it past 32 weeks.

On July 6, 2001 our 2 beautiful boys were born. Kieran, our recipient, entered the world with the most wonderful cry followed closely and loudly by Sebastian. Kieran weighed 6.10lbs and Sebastian 5.12lbs. They did not need any special care and we all came home 4 days later.

The placenta pathology came back and our recipient had 48% and our donor 52% share of the placenta. All the blood vessels connections had been obliterated.

One year on and I still marvel at the fact that they are here and healthy and they are doing so well. They are crawling and pulling up everywhere, chasing each other and are 2 happy, delightful miracles. They love watching and playing with each other and of course with Siena and Max. Their smiles and laughter light up our lives and it is so hard to believe what a hard journey they had to be here. We cannot imagine our family without them.

TTTS has given me a new perspective on how fleeting life can be. One minute all is well and the next all is changed. It has been the hardest thing we have ever gone through but have learnt to enjoy each day as it comes. I want to use my knowledge and experience to help other parents in my situation and educate people on TTTS.

We were so fortunate and blessed that we had a wonderful outcome and I am grateful that we were guided to our wonderful perinatologist who guided us to Dr. Quintero. Thanks to God, all of our doctor’s care and expertise and all the family and friends who supported us and the many, many prayers, we are blessed with two beautiful and healthy twins.