My dad used to run marathons.. he would always say, “Never forget it’s 26.2 miles.” That the 0.2 miles at the end are the hardest. The closer the end gets.. the more challenging it is. It’s almost like you can see the finish line right in front of you, but you can never get there. It takes every ounce of strength to get through that point when your body is so fatigued it can barely keep moving.
This is our 0.2. I have nothing left. Yesterday our boys turned 3 months old. I celebrated Peter’s birthday with an evaluation from the Early Intervention Program. The REIC or Regional Early Intervention Collaboration is a program that provides home services, such as physical therapy and speech therapy, to children with delayed milestones up to three years old. Click here for more information Early Intervention. In other states, such a New York, babies born under 1500 grams automatically qualify ( Peter was 1170 and Maurice 790 grams ) but in New Jersey you have to be evaluated to “qualify.” They look at motor, sensory, cognitive , social and communication skills. They also evaluate your child’s ability to self help. Although Maurice and Peter are 3 months old , their due date was Sept 6 and their adjusted age is that of a newborn. There will likely be delays because of this and early intervention is truly the key. I was almost “happy” I was able to get him in.
You do not need to be referred to this program from your pediatrician. Our amazing physical therapist in the NICU told us about it. You can refer your child yourself by calling 1-888-653-4463 in the state of New Jersey. The evaluation is free and nothing goes on their “record.” You will receive a report that you can submit to your pediatrician if you so choose. The program is also voluntary and you can discontinue services at any time. I cannot stress enough how many studies have shown the benefits of early intervention and how much I recommend it to any parent concerned of their child’s development.
Maurice’s birthday yesterday was yet another month in the hospital. He had his surgery two days ago. The hernia was larger than we had thought and he had to have general anesthesia. It was a very scary time but I’m so happy to say he did incredible. He came out and woke up right away.. he didn’t require any additional respiratory support and was able to eat. Everyone is so proud of him.
Last night Maurice had an MRI of his brain to evaluate what tormented me in utero. Very early in my pregnancy, I was told by Columbia, Maurice likely had a devastating neurological disease. I remember the day like yesterday. After the hour long ultrasound, they brought us into the conference room and said he was missing part of his cerebellum. I begged the doctor to tell me what she thought it was. Her response, without any delay, was Dandy Walker. She suggested I meet with the neurologist so I could learn about how devastating this disease would most likely be. In their report the called the cerebellum “banana shaped” which is also associated with horrendous disease. They recommended termination due to this along with his small size ( he was measuring <1% and Peter >90% ) and abnormal umbilical cord. They told me he would “likely not make it and if something happened to him it would harm Peter. ” As the weeks and visits progressed the reports became more grim.. they said there was a malformation in Peters jaw.. a problem with peters heart .. a dilated aorta.. the list was devastating. They doctor went on to say that most people at this point would ..”scrap the pregnancy and start fresh..” I was not even in my second trimester. I was heartbroken and I couldn’t do it.
I found a maternal fetal medicine specialist .. a doctor who is revolutionary in his field ..our angel Dr. Ruben Quintero. After two separate MRIs on Maurice’s brain (while he was still inside my stomach) it was determined that he had a benign cyst known as a Blakes pouch which would have no effect on his neurological status. We repeated the MRI now that he is bigger to see if the cyst is still there. We just received the results and his brain is normal. This has haunted me for almost a year. To know my son’s brain is normal.. confirmed now once again on an MRI .. is a miracle.
Dr Quintero also educated me on SIUGR (selective intrauterine growth restriction) or having a “small baby.” He said, as long as we stayed in stage one ( good flow in umbilical artery) the likelihood of his demise is very small. He continued to recommend we were monitored closely. Although the boys did have a large discordance in size (ranging from 60-90%) throughout the pregnancy we remained in stage one SIGUR and Peter was not in significant danger.
It was Dr. Quintero who gave us hope. He spoke to me numerous times before I was even his patient. He treated me like a person.. like family. I knew he cared about my babies. He and his colleagues spent countless hours educating me and comforting me. His advice was based on strong medical data and numerous studies. He is a pioneer in his field and the true definition of a physician. I have never met anyone like him.
When I think back to the moment my life changed.. it was not just when we became pregnant. I was told so many times we would lose the boys during our first few weeks at Columbia. This was all based solely on early ultrasounds. The nature of ultrasound is so very subjective. Each technician can do the same test 10 times and come up with a different number. You are looking through skin.. fluid.. amniotic sac .. at a baby the size of a penny. I decided to leave Columbia when my symptoms of TTTS became severe. They no longer brought us in the conference room to discuss the results. When I asked about surgery for TTTS I was told very directly… “we do that surgery to save healthy babies.. and you don’t have healthy babies..” I was 17 weeks pregnant at the time.
That weekend was Palm Sunday and I broke down both mentally and physically. The picture that was painted made sense.. twin pregnancies are at a much higher risk for genetic problems.. Maurice was so so small not even measuring on a growth chart.. their hearts abnormal .. brain issues.. and now even Peter’s face. My advanced maternal age also puts me at higher risk of complications…how could they be wrong about so many things? Was it even necessary to do more tests.. I was sick so very sick from twin to twin transfusion syndrome.. how much more could I put my body through.. my family through .. for “unhealthy babies.”
I belonged to every Facebook support group I could find. I would ask take advice from anyone who had knowledge on the subject. Early on I called Mary Salman the founder of the Twin to Twin Transfusion Syndrome Foundation. She also provided priceless education in regards to the disease and treatment of TTTS. I asked her who she thought would be best to manage my case. She told me she would have to say Dr. Ruben Quintero. She said, “…if there is any problem during surgery or something unexpected.. he will be the one to know how to fix it.” It made sense. He developed the instruments to operate on an anterior placenta ( which I had) and is a pioneer to many other surgical techniques in utero. I was in touch with his office very early in as a “just in case” but at this point didn’t see how he could help us. I just knew I needed to do everything and anything possible to save the boys.
I posted desperately in one of my groups that weekend.. I begged someone to help .. if anyone had any advice. An angel private messaged me with Dr Quinteros cell phone number. I called him.. 10:00 pm Palm Sunday night.. and he answered. He explained facts about SIUGR .. educated me on discrepancies in ultrasound technique ( particularly with the ductus venosis) and said come to Florida. He said ..” I cannot promise you everything will be ok .. but I will do every test needed and statistically speaking you have healthy babies..” It was not false hope. It was a promise to do real medical studies such as a MRI and Echo and base his recommendations on what he finds.
It was that phone call and trip that changed our life. It was that angel of a man who saved my sons. We did end up needed surgery for twin to twin transfusion syndrome. And we did have problems. At 27 weeks my boys were in grave danger. Peter had heart failure from fluid overload. Maurice was in kidney failure and had no fluid left in his sac. I had contractions and was going into labor. The excess fluid expanded my uterus and made my body think I was ready to deliver. The cut off for surgery for TTTS is 26 weeks. I would have been left with no other choice but to deliver my very very sick small babies. But we were prepared. We already had a relationship with Dr. Quintero. They were able to stop some of my contractions with medication and stabilize us just enough to get on the plane to Florida. He agreed to operate. Every day the boys stayed inside helped them survive. It bought us enough time to get steroid shots to help their lungs and magnesium sulfate to help their brain.
He performed the surgery the next morning. Their connecting blood vessels were very large. They were about 5 times the “normal” size. They were not only taking blood and nutrients from one another but they were also dependent on each other for survival. If Dr. Quintero would have performed the traditional surgery where the blood flow between the babies is completely separated .. I would have lost both of my sons. He had to perform a variation of the surgical technique he had originally described. A rare procedure necessary for about 5% of cases known as Supra selective laser surgery. This technique is not yet published or in any literature. It involves balancing the blood flow between the boys rather than separating it. There is no other physician who performs it at this time. There is also no way to know if you need it .. you cannot see the size of the connecting blood vessels until you are having the surgery. For us, Mary’s advice was lifesaving. If we had not gone to Dr Quintero, our boys would not have survived. I pray someone in need one day will remember our story and it can do the same for them.
It is a very humbling experience. To be able to look into the eyes of someone who has saved your children. To know that because of this man’s “job” your babies are still alive. It is the definition of gratitude and love. He is not only a genius Physician, but also becomes a friend to every parent of every child he has treated. I will one day return with my boys so they too can meet the man who has saved their life and thank him. They will always know. When we left the hospital in Florida he said to us, “..take my cell number and call me if you ever need anything .. always.” I know he meant it. We are still in contact today and I am dedicated to helping him raise TTTS awareness and obtain funding to publish his work .. especially the data he has on the procedure he performed on Peter and Maurice.
TTTS is well known to the mothers affected by it. If something can harm your child, you learn.. you learn because your child’s life depends on it. However, there continues to be a need for further education in the medical community. Not all TTTS centers and treating physicians are trained in all surgical techniques. It is a very rare condition. It can happen suddenly. Within this rare condition there are some variations. Ask your doctor about their statistics. How many surgeries have you performed? What is your success rate? What is your success rate with an anterior placenta? Have you ever encountered a situation where the vessels were very large? What is your treatment if a complication arises? The membrane is very fragile. One rare complication during surgery it that it can rupture. There is a procedure that Dr Ruben Quintero has been doing for a number of years know as an amino patch. It can save babies after a ruptured membrane ( membrane rupture could happen after other things as well such as an amniocentesis). It is a relatively easy procedure however not all hospitals or physicians can do this. Some facilities will not even present it to you as an option. Know your doctor. For us, there really was no decision to make. It was not easy to travel back and forth to Florida. It was an expense. I have two other children at home that needed me. But, for so many reasons, Dr Ruben Quintero is my only recommendation for patients who have twin to twin transfusion syndrome and need laser surgery. If you need help or assistance know there are organizations that can help. Contact Mary Salman from the TTTS foundation .. reach out to other mothers. Your child’s life may depend on it.
I’m am sitting in our room waiting for them to return my son. He just left for his circumcision. This is the last procedure we need to do before he can come home. I can barely believe the words as I type them. The tears haven’t stopped today. The happiest of happy tears. My son will be home and family and heart again whole. It is surreal.
This final stretch has been the longest. I do not remember what life was like before the NICU. Having to leave my babies .. juggle them .. watching my children suffer. Watching my sons grow outside my womb. The medicine that gave them life. It has remolded my heart in ways that have forever changed it.
I will never be able to find the words to express my gratitude. To my husband for our children and his support, to my father for coming with me to every ultrasound appointment and then sitting beside me everyday in the NICU while James was at work.. my mom who moved in my home to ensure I would be able to spend as much time at the NICU as I needed .. who made sure my other children were always happy .. My parents are angels.. I pray to be like you for my babies… the most selfless people.. who live and breathe for us.. .. my sister what would I ever do without you.. my best friend and second mother to my girls… I have been blessed.. I will make sure my son’s always know what you did for us… our family and friends .. every call and message …the strangers that I have come to love like family … the practitioners and life saving medicine that gave my boys the ability to survive being born months too soon.. I have never believed more in a higher power and the strength of prayer. I know with all my heart that all the positive thoughts and energy given to them aided in their success. Thank you for following us in this rollercoaster of a ride. This is my heart…My attempt to document the pain and beauty… our journey .. our story ..so it may one day help someone else and so that my boys always remember how incredible they truly are. So they never forget how much they are loved.
But mostly today I am thankful for my sons Peter and Maurice. You have grown my heart larger than I could have ever imagined. You taught me about love and strength. You have taught me what it truly means to be a mother. God knew my heart needed you. My sons this is just the beginning .. the beginning of the beautiful life we will spend together. Counting the seconds until we are all together as one. Your family cannot wait to meet you and shower you with love endless love. As your papa Maurice says .. you will always be held in someone’s arms and never alone again.
Please take a moment today to send prayers and blessings to those who have not been so lucky.. to those who have suffered and lost .. espically to my dear friend who lost her son to TTTS and who has been my strength and light throughout our journey. I love you and will forever admire you. Thank you.