February 7-14 is Congenital Heart Defect Awareness Week. To help raise awareness, spread knowledge and share the effects of this disease, Jayme of The Paper Deer Photography Blog, Christie of Lemon Squeezy Home and Kierra of The Irvine Home are each sharing one story of a child with CHD every day to showcase the trials, triumphs, journey and heartache of this devastating disease. We invite you to read and share this project to further our voices. Thank you. #Facesof CHD
Maya is a bright, spunky and very affectionate 21-month-old girl from Denver, CO. Maya is a survivor and fighter of many things. She is a twin, a TTTS donor survivor and CHD heart warrior. Maya is mighty in so many ways and has fought and proven how tough she is time and time again!
I found out I was pregnant with twins at my 12 week ultrasound. We were rather shocked but quickly terrified as we were told not to get too excited because the babies measured very differently. The doctor would not even give us an approximate due date and basically told us to be prepared to lose the babies. We had a follow up ultrasound, which determined the babies were different in size but the doctors said they were fraternal. Most likely the babies were a few days apart, explaining their size difference, but that they should develop and grow just fine.
Things continued on ok. We had two more appointments and things were going well. I felt great–I was growing so figured the babies were too! Then at our 18-week anatomy scan found that the babies were in fact identical twin girls! But they were in very serious danger as they had stage 3-4 Twin-to-Twin Transfusion Syndrome, (TTTS). Maya, the donor was giving all of her blood and nutrients to recipient sister, Maleia. Maya had barely any fluid around her and was essentially shrink wrapped in her own sac. While Maleia had an access of fluid and was essentially drowning, her little heart was thickened and having a hard time keeping up with the extra fluid. We were given several options including the choice to terminate one or both pregnancies, a choice that was offered but never once considered. The only way to try to save their lives was to have a fetoscopic surgery to sever the shared blood vessels in the placenta and equalize the fluids. We had surgery just two days after the diagnosis. Over 20 blood vessels were laser ablated and over 2.5 liters of fluid removed from Maleia’s sac and fluid reached Maya. We are incredibly lucky that both girls survived the very delicate surgery. The surgery was deemed successful but we were told to proceed cautiously as Maya only had 10% share of the placenta and still was not getting everything she needed. She would be very restricted in her growth.
Initially doctors were worried about Maleia’s heart being over worked from all the extra blood she was processing. Several fetal echocardiograms were preformed on both babies. Maleia’s heart was thickened and I was put on medications to help. It was once Maya had fluid and was no longer “stuck” that they could finally see her heart. After a very long uncomfortable fetal echo the doctor gave us the news that she had Tetralogy of Fallot. Her heart was formed with four defects, she had a very large hole, pulmonary stenosis, overriding aorta and thickened right ventricle. We were beyond shocked that on top of everything we had already been through we had this as well. We again were told to be cautious as we went forward and again were given the choice to terminate. It still was never a consideration.
At this point I was 20 weeks pregnant and put on bed rest and very strict monitoring. I had Maternal Fetal appointments weekly and fetal Echos monthly. I did my best to try not to worry and let the babies grow. We made it past 24 weeks, a huge milestone! Then 28 weeks! But at just over 29 weeks the sac around Maleia ruptured. I was admitted to the hospital until the babies came, which was in a way expected as her sac had been compromised during the fetoscopic surgery. I was told to plan on a C-section, since Maya was the second baby and they were not presenting correctly that she might not survive a vaginal birth due to her heart and the stress. In a way I am thankful that due to the TTTS we knew this in advance and could make delivery as easy as possible for her.
At 31 weeks and 1 day I went into labor that could not be stopped. Maleia was born at 3lb 13oz 16.5in. Maya was 2lb 3oz 14.5in. Maya was blue and not breathing but they were able to get her to breathe. The girls were immediately taken to the NICU.
Being preemie and exactly two months early the girls both needed oxygen support, had typical jaundice and could not eat on their own. They slowly started to grow and I was relieved that they were born and being well taken care of. Maleia was in NICU for 44 days then came home. Although, she went with me every day to see Maya! Several weeks later Maya started having many problems. She was going through heart failure. Her heart was greatly enlarged and she was having a very hard time with her oxygen saturation and she began breathing very fast and hard. At 63 days she was transferred to Cardiology ICU at the Children’s Hospital of Colorado. Maya was still very small at just barely 5lbs and just under 2.5 months old but they decided she needed her heart repaired and could no longer wait.
On June 28, 2013 Maya underwent her first open heart surgery. The surgery went well, the hole in her heart was closed, the right ventricle scraped to remove excess muscle, but unfortunately her pulmonary valve was in such bad shape that it could not be spared and was removed. The first 48 hours were terrifying. Her blood pressure was all over the place; she had a huge build up of fluids and of course was in a lot of pain. Surprisingly after a few days she showed great improvement. Her recovery ended up going far smoother and faster than the doctors or anyone expected and she was moved to the step down unit a week before planned. Maya started to do great! She was breathing well and only needed a small amount of oxygen. She was awake, alert and happy. But she still was not eating. So we made the tough decision that she would have a Gtube surgically placed. A small valve that would protrude from her belly and go directly to her stomach so that she could be feed and get the necessary nutrition she was unable to consume by mouth.
After a brief recovery Maya was finally able to come home after 97 days! That day was one of the best days of my life. I finally had both of my babies at home and we could truly begin our life as a family.
Today Maya is doing great! She is walking and talking. She is loud and energetic, full of happiness and incredibly sweet. She is meeting her milestones and is right on track. Recently Maya was able to get rid of nighttime oxygen. She still has a Gtube and struggles some with eating and consistently gaining weight but has come a very long way!
The next few years will be tough. Starting this spring Maya will undergo sedated MRIs to get an in depth look at her heart function. Based on the results she will have another open-heart surgery this summer or next to place a pulmonary valve and close a residual hole in the top chambers of her heart. Once again Maya will prove how mighty she is!
What Does CHD Awareness Mean to Me?
To me CHD awareness is part of life. It is not just explaining but teaching people about the heart and the defects that it can endure. It is about fight. Not just from the patients, the all too many sweet innocent babies, children and grown adults who battle it their whole lives but the fight from their parents and loved ones. The strength that I have experienced myself, and witnessed from other heart moms and families is truly remarkable. Together we build strength, hope and a community to fight CHD together. Not only to fight it as a whole by raising awareness, teaching others and seeking ways to prevent and cure it, but by fighting and supporting each other every step of the way. Through the simple check ups and echos, to the cath labs and surgeries we support each other and fight through this together.
Follow this family on facebook HERE. You can also follow them on instagram @twinmommawrz and also find her with the hashtag #mayathemighty
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