Tag: TTTS

Loss of twins Emma Rose and Abigail Grace

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After our loss, this was written in memory of our beautiful daughters, Emma Rose and Abigail Grace, who are now with God.

My husband and I found out we were pregnant in November of 2005, and were really excited to have a baby born in the summer.  We went for our first doctor’s appointment in January and they did an ultrasound to make sure the due date was correct.  That was when we found out we would be having twins.  We were so excited yet scared out of our minds at the same time.  How would we take care of 3 children under 3 years old at one time?

Everything was going well, so we thought, and had another appointment at 14 weeks where the babies looked to be healthy and their hearts were beating away. There were happy little feet all over the ultrasound.  It was a few weeks later we would have the worst day.  It was February 13th, I will not have a liking for Valentine’s day anymore, when we went for our next doctor’s appointment.

The Doctor was running late and everything seemed fine.  Then I sat on the examination table for the ultrasound and knew something was wrong.  The Doctor did an ultrasound and could not find a heartbeat.  I was sick, I couldn’t help but think how could this happen to me?  I did everything right, I didn’t drink caffeine, I even watched my sugar intake.

On February 14th, we went to the delivery unit of the hospital.  And they did another ultrasound.  I prayed the enitre night before that something must have been wrong with the ultrasound machine and it just wasn’t working right.  They did the ultrasound and the result was the same bad news.  There was no heart beats.  We had lost our twins.  They had passed away around the 15th week, shortly after I had seen them dancing on the ultrasound.  Our twins had suffered from TTTS.  It caused both babies to have heart failure.

I gave birth to our beautiful daughters on February 15th, 2006.  Their names were Emma Rose, and Abigail Grace.  They will forever be in our hearts.

Emily

Losing Multiples

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In October 2005, my husband and I were so excited to find out I was pregnant. After two previous miscarriages, the doctor sent me for my first ultrasound at seven weeks. To our surprise we found out that we were expecting twins. This wasn’t too much of a shock since we already have four year old fraternal twins girls and were told our chances of having twins again were quite high.

My doctor then sent us for another ultrasound and we got another shock. I was twelve weeks pregnant and the radiologist started to do the ultrasound and couldn’t believe what she was seeing. She had told us that she had never seen this before and was in total shock. I was scared at this point because of our previous miscarriages so I asked if everything was okay with the two babies. She said they were fine but there are actually three babies. We were having triplets!

Baby B had been hiding on the first ultrasound. We found out that Baby A and Baby B were in the same sack, which meant they were identical and Baby C was in its own sack which meant that he/she was fraternal. We were so excited. We always wanted a big family but couldn’t believe it was happening with just two pregnancies and no fertility drugs. When I went to see my doctor, he said I would be going for ultrasounds every two to four weeks because of the high risk factor with carrying triplets.

At sixteen weeks we went for another ultrasound and everything seemed to being okay. Baby A was slightly bigger than Baby B so they were a little concerned about (Twin-to-Twin Transfusion Syndrome) TTTS. Baby C was right on schedule. They told us they would watch this [TTTS] and there were procedures they could do if need be. The doctor did not seem too worried about it and said to come back for another ultrasound in four weeks.

At twenty weeks we went for another ultrasound and had another shock. The doctor came in, put his hand on my knee and said there is no easy way to tell you this but Baby A and Baby B had passed away but Baby C was doing fine. They figured it had just happened within the last three to five days and there was really nothing they could have done. They told us that Baby A was taking from Baby B which is called TTTS. It was so hard to believe that this was really happening. On the ultrasound they looked fine, they were two fully formed little babies but their little hearts just stopped working. We were devastated. It was so hard first we were told twins, then triplets and now we only have one. We know we have to stay positive for the little guy that is staying so strong for us but it is so difficult after losing multiples already. The doctors told us the Baby C is oblivious to what was going on and expect him/her to go to full term or close to it.

I didn’t want to know what I was having when I found out I was having triplets but after finding out this terrible news I needed to hear something positive so we found out that Baby C is a boy. We didn’t care whether it was a boy or a girl, we just needed some happy news. I am now 26 weeks pregnant and Baby C is still doing well. They were worried about me going into pre term labor but so far so good. I have days where I don’t want to get out of bed but have to be strong for my two little girls and my beautiful baby growing inside. We have good days and bad days but reading other peoples stories have really helped me to stay strong for my little boy who is truly a blessing. If we had not found out we were having triplets and just twins we would not have a baby right now that is developing so well and doing great. God has given us five precious gifts.

My two angels are in heaven now looking down watching over us. My two four year old girls are amazing and cannot wait to meet their new little brother, whom should be arriving in June 2006.

Rhonda (Edmonton, AB)

Twin To Twin Transfusion Syndrome (TTTS) Survivor

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My name is Nancy Reyes. I have beautiful 5 year old twin girls who survived twin to twin transfusion syndrome (TTTS). I was 20 when my doctor called me letting me know there was something wrong with my pregnancy. I was around three months and had blood drawn and an ultrasound showed only one baby. The results from the blood were so high that I went to see a specialist.

I remember as if it was yesterday being told I was going to have a baby with down syndrome (they didn’t know I was carrying twins) and having counseling that day.  Our options were to keep the baby with its special needs or to have an abortion.

It was such a hard time for my husband and me, we already had a three-year old boy. We were taken that day for another ultrasound to get an actual look to see what was wrong to our baby. Soon enough the blood results changed.  We were carrying twin girls. Everything was suddenly so different. From being told we had a down syndrome baby to having twins! Shocking! that is all I can say. We learned that our twins had TTTS.  Being young and Hispanic, I didn’t really realize what twin to twin syndrome meant. I just knew that I had two precious babies inside me and they needed me to be strong. I had to take care of myself and them.

At four months I stopped working to be on complete bed rest. My doctor and nurses were wonderful. They explained a lot to me but it was so hard to understand at that time and to be honest, almost six years later I am realizing how lucky I am to have my girls by my side. Not everything was all beautiful. My pregnancy was very difficult. I had excess amnio fluid removed twice from the receiver, making the possibility of a miscarriage even higher. Their heartbeats at times would be real great, but there was the possibility of having them early. I thank God for letting me carry them for nine months.

I was really lucky. My girls were due on January 1st, but they were born December 24, 2000, Ruby 5lbs11oz and Melissa 4lbs2oz, Ruby’s heartbeat was dropping so my delivery was induced, all the pain and suffering was worth it. I can honestly say I would do it again to have my girls with me like I do now.

Weeks after birth their birth they contracted RSV virus, not once but twice. It has been a rough journey, but I am enjoying every single day. I never realized how lucky I was, especially not knowing what TTTS was and how severely the girls had it. I thank God and I am so glad we are survivors of this disease. I wish the best to everyone who is carrying this disease, take it easy and pray that everything should be okay.

Nancy, Ruby & Melissa

Our Christmas Miracles!

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I went for my routine scan and it was to be an internal one. The doctor could see something other than a baby’s heartbeat. It turns out it was another baby’s heartbeat. We were having TWINS!

I was only 6 weeks along and already they could see that they were identical twins, both sharing the same placenta, but separate amniotic sacs. I was shocked. My partner wasn’t because he has them in every generation of his family.

I was transferred from the anti-natal unit to the neonatal medicine unit where I was scanned every fortnight [2 weeks]. Then at 13 weeks, I went for my routine scan and it was noticed that the babies had Twin-to-Twin-Transfusion syndrome (T.T.T.S.). It was quickly becoming an issue for the babies. My counsellor told me what to expect. My case showed that there was a 10% chance of survival of one baby and barely any of two surviving. There was also an 85% chance of brain damage or celebral palsy to one or both babies. All we did was cry. She told us we should think about ending the pregnancy as it takes a very strong person to look after one disabled child never mind two, our working days would be over and they would need 24/7 care, by both me and my partner. I very nearly gave up but my partner gave me hope, so on we went with our pregnancy.

We discussed other options such as laser surgery and amnio-reduction. My placenta was lying across the front of my stomach so laser surgery was out of the question. The placenta in such a position worsened our case as laser surgery has a better chance of survival. Amnio-reduction was the next best thing so we chose that option.

Amniotic fluid was drained from around the bigger baby’s sac to even out the fluid, but after a few weeks the fluid crept up again. We had a foetal doppler scan and discovered hydrops had developed on one of their hearts, which can cause heart failure. We were then sent to a consult in women’s hospital in Birmingham. I went on to have another amnio-reduction in Birmingham. This time they took off quite a lot of fluid, so I had to stay overnight and the hope was that I would get to about 32 weeks to give the babies a better chance.

Back in my local hospital, I was 27 weeks and there was a reverse endystolic flow in one of the babies’ cords. I was advised to burn one the babies’ cords to give the other baby a stronger chance although there was still not a definite chance for the survival of either of them. Further, due to possible strokes because of the two different blood pressures in the cords, there was a chance we could lose them both at birth. On yet another routine scan at 30 weeks, it was discovered that the reverse flow was back and much worse. I was kept in over night and received steroid injections to help develop the babies’ lungs. I was scanned on the 15th December 2004, 10 weeks before my due date and we were told the worst and the best thing: our babies were coming into the world the next day.

Thursday, 16th December 2004, I went down to theatre [delivery room] and at 13.07pm Twin 1 (BRANDON) was born weighing 3lb 2oz. Then three minutes later Twin 2 (BAILEY) was born weighing 3lb 15oz. They were whisked off to S.C.B.U. [equivalent to North American NICU (Neonatal Intensive Care Unit)].

I didn’t get to see them until the next day. It was the best day of our lives; we had two healthy boys. We are so very lucky and give special thanks to all the staff who looked after us and our two little miracles right through the pregnancy. They were in S.C.BU. For 6 weeks. We were constantly there feeding and changing. They finally came home beginning of February 2005.

We were so very lucky and they are our Christmas miracles. We thank everybody involved in bringing these two bundles of joy into our lives. They are now 9 months old and an absolute joy to have. We just can’t believe how lucky we are. Thank you. We hope this story helps other people in the same situation as us.

Clare and John, United Kingdom, Proud parents of Bailey and Brandon.