I continue to stay very active in the Facebook support group that has proven to be an essential tool during my journey. It is a group of mothers all affected by Twin to Twin Transfusion Syndrome. Many of the members delivered their babies years ago , some even have teenagers, however they continue to support new moms , provide education , post pictures and give hope when all is lost. This community has welcomed me and given me friendships that I will forever cherish .. women on this path with me.. who understand the pain and the joy. I never thought Facebook would help me save my babies.
Our direction was changed late on a Sunday night in March. After being told we “did not have healthy babies” and termination would be our best option again and again, I didn’t know where to turn. How could two doctors at a very reputable hospital be wrong .. I would question myself. They had told me baby A had a recessed chin which is facial deformity commonly seen in genetic conditions. I was also told baby A had a bad heart with a dilated aorta. As for baby B they said he had a brain cyst that was likely dandy walker syndrome. A devastating condition that causes significant neurological damage. Also being that he was very small , they said there is a very likely chance he will not make it and I should , at the very least , terminate him. If he dies in the womb he could cause baby A brain damage or demise as well. They called this procedure Radio-frequency ablation and they do it by occluding the umbilical cord of one baby. They presented it as a very easy procedure and almost a sacrifice to save one baby. The doctor smiled as he told me they had the best statistics for this. I thought to myself, how wonderful that you are so good at terminating babies. It disgusted me. I was told I could just “ start fresh” It disgusted me even more. All of this information without any confirmation on echo or MRI. They agreed to do more testing but at this point it seemed useless. When I asked about my TTTS synonyms I was dismissed and told there is nothing to do because they would not operate on “unhealthy babies”. My heart sank.
I shut down Palm Sunday weekend. I knew it couldn’t be. We had just lost my father in law a few weeks after we found out we were pregnant.. with twins .. and that they were boys. I prayed. How could god give us this gift Just to take it away a few months later. I could feel them by now.. the kicks and flutters. I knew their positions. It was a nightmare. I posted a desperate message.. asking for help but really praying for a miracle. I knew it would come. Minutes later a stranger sent me a private message. She offered me Dr Quintero’s cell number and said he was expecting my call. This message would prove to be my miracle … and I consider that woman an angel.
I saw a post that reminded me so much of the frantic one I had put up in March.. desperate for help. The loss of trust in the medical system. Being treated as though “ your pregnancy is disposable.” Given really no options other than termination. She had issues from the same doctors I had originally went to .
I immediately wrote to her and the woman the had helped me. I shared my experience. Every detail … all the pain came back to me again and I couldn’t help but cry thinking of how far we have come. I asked the woman who helped me if we could do the same for her. She immediately contacted Dr Quintero who agreed to speak to her and allowed us to give his cell number. Within 24 hours she was on a plane and scheduled to have a life saving surgery. It felt so good to be able to help but the truth is all we are doing is connecting people with the right care. I’m happy to report she and her babies are doing welI. She would have lost them if it wasn’t for Dr Quintero . It shouldn’t have to be this way…
After My visit in Miami at the fetal Institue, I was referred me to Dr Al Khan and Dr Jesus Alverez Perez at Hackensack University hospital. I was surprised because they are not listed on the TTTS Foundation website. I have that site memorized and never remember seeing it. I trusted my doctor and if he trusted this group that is where I would go.
It proved to be the best decision we could have ever made. The care was exceptional and the doctors truly are vested in you and your babies as people not just numbers. I was still scared from all of the information we received in the past. They repeated all the tests again. The brain MRI and the echocardiogram. Baby b did have a cyst in his brain however that cyst is benign. It is called a Blake’s pouch and over time disappears with no sequela at all. He was also small but had good blood flow and it would be monitored weekly. As long as the blood flow was strong there is a very unlikely chance of any issues and the risk of fetal demise was very low. Baby A had a normal heart on echo.. slight tilt but within normal range.. no dilated aorta just normal. And his chin is perfect. We did genetic testing at Dr Quintero’s again just because they put such fear in us and the results all came back normal . The doctors at Hackensack reassured me my babies were ok. They educated me.. allowed me to ask questions .. and held my hand when I cried both happy and sad tears. Dr Quintero continued to be an active part of my care and I was able to call him at any time. It was my very own dream team. When ttts was found they consulted with Dr Quintero and arranged for me to have surgery within 24 hours. They even offered to have him treat me at Hackensack if I didn’t feel comfortable flying. Once in Miami my New Jersey team did not forget about me. They called multiple times to ensure I was ok . A few days later, when I returned home and ttts came back they comforted me and within a few hours had my babies delivered safely. To this incredible team I am forever indebted and eternally grateful .
Tonight I contacted Mary, the founder of the TTTS Foundation and shared these stories. I asked to please have Dr Alverez Perez and Dr Al Khan listed on her site. It is so important that people have access to this level of care. She agreed. I confirmed it would be ok with Dr Al Khan with a quick text ( yes I can text or call my doctors at any time and they respond immediately .) Dr Al Khan’s response to me is something I will forever cherish. This care helped treat my babies but also my heart. This is the type of care everyone deserves!
…. “It was my obligation and pleasure to take care of you. You are an incredibly strong woman who has fought and done everything for the well being of her newborns. I commend you. At the end of the day, you are the one who fought and persevered to ensure that everything worked out. I am so happy that all is well… You take care, stay well and call me if there is anything you need.”
I am so blessed to have angels watching over me and my boys. We have been treated by true healers … true Doctors … and I cannot say enough wonderful things about them. I will continue to advocate for other woman and help to bring them this level and quality of medicine. Every mother and baby deserves it.