This is a story about two people who, when faced with a very dire prognosis, realized how little information and how few treatments were available for people experiencing a serious fetal syndrome. Since that time, the Fetal Health Foundation has been providing information and hope when people really need it most. Can't say enough good things about this organization.
Absolutely one of the best foundations around! Love everything about them...from the organization to the people...very helpful, caring and loving people. Thank you for being the best! Xoxo
Very helpful with any information I needed or had questions about. No questions asked they treated you like apart of their family
TWINS!
There are few moments in one’s life that they can recall every detail about a particular day. For us it began with the news we were expecting twins. This was probably the first time I was truly speechless for what seemed to be 48 hours, but was probably not long enough for my wife. That day seemed like a dream but confirmation was posted on the refrigerator door. Yeap, there are two babies.
The Diagnosis
The next moment of recall came in our 20th week of pregnancy during what was supposed to be a routine check up to finally confirm that I was going to have two Daddy’s girls. The ultra sound technician didn’t say much and paged the doctor to come in immediately. The doctor came in and there were whispers. Next we were being sat down and told that we were being affected by TTTS (Twin-to-Twin Transfusion Syndrome). TTTS is a disease of the placenta that causes one twin to receive all the nutrition and blood and the other none or very little. The diagnosis was confirmed by the ultrasound that showed one of our babies with too much fluid and the other with none. She was literally “shrink wrapped” to the placental wall without any fluid to move around in. All our doctor could tell us was he had only gone through this once before and the outcome was not favorable. I remember him telling us that we just need to get them further along alive so we can deliver them and give them a chance to live. Our care was now being transferred to a high risk specialist.
That night all we did was research books and the internet about TTTS and everything we saw gave us little hope. Everything we read told us we were going to lose our daughters. Finally we came across the TTTS Foundation website. We contacted them immediately and left a message of despair and a plea for help.
The Specialist
The next day we were off to the specialist. The specialist was amazed that our girls had survived this long and indicated to us the real grave likelihood of our pregnancy. We were told, but not recommended, we could terminate the pregnancy if we felt that we would not be able to handle the likely demise of our girls. These were our daughters and I would gladly lay down my life so they could have a chance at one. We would do everything we could to give them a chance and that is what we did. First the specialist performed an amniotic reduction to ease the pressure inside of the womb. We were to return in a couple of days to see if this helped.
On our doorstep when we arrived home was a large packet from a supporting organization. In it we found everything one would need and want to know about the syndrome and our options. From this we got in contact with one of only two doctors in the world that are considered the foremost experts. A few days later we were on our way to Tampa, Florida to visit Dr. Quintero.
The Trip to Florida
The Dr. visits began with us going through intense ultrasounds. I came to hate these, for every time we went into one, something was discovered that was not in our favor. First one of our twins had only a two vessel cord instead of a three; next the other twin had velamentous cord insertion (a condition where the cord inserts into the membrane instead of the placenta); then the doctor found a very peculiar anomaly in the blood flow of one of the girls that he had never seen in any of his 300+ cases. Dr. Quintero put his hand on my wife’s stomach and looked at us both and told us he would do what he could to save our girls.
My wife underwent surgery. The Dr. used a 3mm incision and used an endoscope to map out the blood vessels in the placenta, determine which ones were connecting the girls and seal them off with laser to stop the transfer of blood between them. There were some complications with the surgery. Dr. Quintero had to devise a way to move one of our twins, the one that was stuck, out of way so he could access the placenta. This enabled the Dr. to seal the correct vessel, otherwise our girls would have perished. Finally the surgery was over and the girls were alive and my wife was doing well. There was a huge sense of relief that we finally were able to do something to give our girls a chance at life. The next 24 hours were the most critical. We were in danger of the girls potentially dying from the surgery and we were in danger of premature labor due to the invasiveness of the surgery. The next day came an ultrasound. We were told before they began the ultrasound that there was a 50% chance that the girls, one or both, may not have survived. Our fears were as intense as they had ever been. By now we were very good at reading ultrasounds and knew what to look for; however that day before we could even determine a baby, the Dr. announced, “Both babies were alive!” Now we were on our way home to pray and hope.
Post Surgery
The first four weeks post surgery was the most critical. My wife was on bed rest for the duration of the pregnancy in some form or another. If we made it fine past the four weeks, then our odds would begin to look a little better. 85% chance of one twin surviving and 45% chance of them both surviving. We had constant weekly and twice-weekly monitoring by our OB/GYN (Dr. Dorr), our specialist (Dr. Sabin), and monitoring by Dr. Quintero’s group.
At 35 weeks it was decided to deliver our girls. They had reached a point where their growth had plateaued and it was best to get them into a better environment. Due to the potential complications with the velamentous cord insertion of one of our girls, it was best for my wife to deliver by cesarean section. On June 17, 2003 our miracle babies Ashley and Aspen were born. To see them alive and fine upon delivery was my dream and now that dream came true as tears gushed from my eyes and soul. The next recall moment that will live with me forever is the honor I had in taking Ashley, held in my arms, down to the NICU. As I walked out of the OR, I could see our families and I was the first to introduce her (again full of tears) to her wonderful family. Aspen and Ashley spent only 13 days in the NICU at Littleton Adventist Hospital.
We crossed the finish line that day with Dr. Watson, who was wonderful, but we ran the marathon with Dr’s Dorr, Sabin and Quintero. We think of them often and thank them for all their care, compassion and dedication.
Today
Today our girls are healthy and show no signs of ever having been affected by TTTS. It is nothing short of a miracle. We have made it our life’s goal to do everything in our power to provide awareness, hope and support to those parents who will be affected by TTTS and other fetal syndromes.
If a friend were ever to come to me with news of a fetal syndrome, I'd send her directly to The Fetal Health Foundation knowing that she'll get prompt, understanding assistance from people who have been in a situation where a baby's life was at stake. This group of individuals amazes me with their compassion, their courage to talk about difficult things, and their devotion to making the way forward better for other parents. The news from the doctors can be scary: parents can count on the Fetal Health Foundation to help them find hope.
I have been involved with the Fetal Health Foundation for almost a decade. I love being part of an organization that is centered around hope and help. I find joy in connecting organizations and companies with the Foundation to keep strong ties to the community and grow our ability to provide services to families. I believe whole heartedly in the mission of the Foundation and relish the opportunity be an advocate for it.
The Fetal Health Foundation is truly committed to assisting families with fetal health syndromes. Everyone I have talked with is so well educated about fetal syndromes and they know medical experts across the country. Those connections are invaluable when you receive a diagnosis and don't know where to turn. They also understand how critical time is to getting care and will drop everything to help you get to the specialists you need.
Fetal health organisation is a life saving one ! Although i couldnt help my twin girls and lost them both in my womb due to ttts , but this organisation and its staff offered me the chance and all the needed support needed to try to save my twins! I live in beirut lebanon where they dont even have an office but i was able to connect to them through social media ! They sent my file to different doctors and tried to provide all the needed information about my case but time was against me !! They even supported me morally in the hardest time ! I am willing at any time to help this organisation complete its mission in helping people !!
When my unborn twins were diagnosed with a life threatening condition I didn't know where to turn. A friend found the Fetal Health Foundation and their message board. I wasn't able to connect with them until after we had fetal surgery and, sadly, lost one of our boys but this didn't change the level of support I received as it did from another support foundation. I received phone calls from two of the members of their board over the next few months and was even to get help from them to understand my surgical report and placental pathology report.
Since then I've witnessed a great many people receive both amazing support and financial help from this first rate foundation.
Thank you Fetal Health Foundation for all you do.
At 11 weeks pregnant, I was told 2 things that completely rocked my world. Number 1, that I was having twins. And number 2, that I had SIUGR.... I was terrified (frankly about both things) and did what everyone does and Googled SIUGR. Truly that didn't help how I felt. Hopeless and Helpless. Until I came upon Fetal Health Foundation (Fetal Hope). There I found the information in needed to advocate for myself and my boys at all the many specialist appointments. I found the friends and support I needed through the message boards. And I found the strength to keep moving forward with HOPE. That was over 9 years ago. I now have my beautiful identical twin boys to show for that perseverance and hope that I kept alive. It would have a much scarier path without FHF and I am so thankful for them!
TTTS affected my twins from 17 weeks, then at 22 weeks had to have laser ablation surgery. Thankfully we were treated at a centre of excellence that monitored throughout, however a lot of ladies don't get the appropriate monitoring & support during an identical multiple pregnancy. This charity helps bring awareness to such a life threatening condition.
The Fetal Health Foundation helped me share my story of loss, and gave me the opportunity to help families going through a fetal syndrome and families that have lost. I was about to share my story to help those grieving and try to reach families and connect them with doctors to save their babies. There is no bigger joy then being able to help a family with information, and raise funds to support fetal research.
After being diagnosed and given poor odds for my twins to survive I came to Fetal Hope's site and asked tons of questions. I had an overflow of compassion and answers. After many of my bi weekly Perinatologist visits, Fetal Hope gave me more clarification, personal experiences...and quickly. In one of my first visits, I saw the TTTS specialized Peri wearing his FetalHope support bracelet and it confirmed how tight knit these highly specialized doctors and Fetal Hope were. At one point we were given less than a day to get to another doctor (a flight away), Fetal Hope was there to offer help in getting us there. I still to this day (my twins will be 4 in Aug) can't speak highly enough of what they do. I direct everyone I come in contact, that is pregnant with multiples, to them. Heaven forbid they have a diagnosis that would need Fetal Hope, but if so, there is no group I feel that stays on top of research, educates (both dr and mom), is quick help, and has compassion for those that come looking.
Years later I made another flight to Seattle to attend a Fetal Hope event and again thank them and the Peri that helped me.
Fetal Hope is unique that it is one of the only organizations to serve as a liaison between both families affected by fetal syndromes such as Twin-to-Twin Transfusion Syndrome and other fatal syndromes, and the medical teams that provide their care. The Foundation was created by families who had each experienced fetal syndromes first-hand, with varying outcomes. We each know what it felt like to have little hope when first diagnosed, as little knowledge could be given or found. Families now have a place to not only receive information on their diagnosis and treatment options available, but also to consult with a Medical Advisory Board comprised of some of the nation's leading fetal care surgeons, connect with families with similar experiences through a Family Matching Program and online forums, and even apply for Travel Grants when immediate treatment is necessary and family funds are scarce. With over 40,000 visits to its website each year, Fetal Hope boasts one of the largest online repositories for fetal syndromes, that are easily accessible, accurate, and in laymen's terms. Parents no longer have to live without the hope of realizing their dream of a family.
talitha 06/04/2011
Thanks, Libby! We certainly appreciate your support of our events and cause, and love hearing about your little miracles (all of them!).