Update: Dar’Leighy was born almost 5 weeks early, she’s had 5 surgeries already and has 2 more major surgeries. She has made so many improvements since her birth and through all her surgeries. Follow our page! We have a lot of updates and you can follow her story as well as keep up with real time updates of her.
Our daughter, Dar’Leighy Valentine Leyba, will be born in September. On our 6-month mark on June 10th, we had an appointment for an anatomy scan. They found initially 5 things that were concerning to them, with 3 of those things being more serious.
The least concerning was some fluid buildup in her kidneys that, with time, can go away and will hopefully resolve itself. The next is her foot; she has a case of severe sandal toes between her 2nd and 3rd toe, and we are not sure if she has 5 or 6 toes. Basically, her first two toes are on the side of her foot.
The initial last three things go hand in hand and are very serious. She has VSD (Ventricular Septal Defect). It involves a hole in the wall between the heart's lower chambers and will require a patch when she is born. She also has something called Truncus Arteriosus (TA). TA is a rare (1 in every almost 16,000 live births), critical congenital heart defect where only one large blood vessel exits the heart instead of the usual two, causing both oxygenated and deoxygenated blood to mix, leading to low oxygen levels in the body and too much blood flow to the lungs. The next thing on the list is the baby's heart is 83 degree tilted compared to a normal Fetal Cardiac Axis, which normally sits at about 45 degrees. Her heart is essentially either in the middle of her chest or the right side.
Because of all of these different things, we are being sent for an amniocentesis to see if all of these things are connected. At our most recent appointment on June 18th, we found out that the baby has 3 spleens instead of 1 as well and also she has Azygos continuation of the IVC (a rare anomaly where the inferior vena cava is absent and replaced by the azygous vein).What all of this means is Dar’Leighy will need open-heart surgery very soon after birth. They will be rotating her heart, putting a patch where the hole is between the two lower chambers of the heart, and placing a conduit that acts as a bridge, connecting the right ventricle (the heart's pumping chamber that sends blood to the lungs) to the pulmonary arteries. Without surgery, over 70% of babies will die by age 1, so this is EXTREMELY important. She will also have a plastic surgery consult for her foot. As for her spleens, we just found out about them and we aren’t sure exactly what’s next with that but is most likely paired with the heart conditions as well as her foot and that’s called polysplenia syndrome.
We will be going to Valley Children’s to give birth, where her surgical team will be prepared and ready to save her life. Due to these surgeries, her mom and I will be in Madera for AT LEAST a month, but it can be a longer period of time depending on if she thrives or if she needs multiple surgeries after her initial ones, which is very likely.
With ALL of that being said, we are asking for help to pay for expenses associated with not only keeping our home and lives together but also funds to travel to doctor appointments (before and after her birth), motel stays, gas, and food while we are there. We also don’t have a very reliable car and are going to need something more sustainable and safe for our trips before and after the baby is born.
My pregnancy has been more than perfect, and we could have never imagined having to go through THIS, but this is where we are. I have faith that this little girl will fight her hardest and she will be okay. All I wanted was for the time to hurry up and get here so I could hold her, and now I just want her to stay in my uterus and live off of me forever.
We will be doing different fundraisers, basically anything we can think of. If ANYONE has any ideas or can help in any way or just share our story, all of it will help to make sure our little girl comes home to a less stressful environment. I will be updating as appointments come up and keeping everyone informed.