- Posted July 3, 2014 by
Mission Viejo, California
This iReport is part of an assignment:
Raising a special needs child
Your daughter will not live three days
Our story started over 7 years ago as my girlfriend at the time was pregnant. We were both recently divorced and starting a new life with each other. We each had a child from our previous marriages and our new child together would be a great way to bond everyone together. The pregnancy seemed to go just fine, and it wasn’t until later that we realized we were not offered all the tests that an OBGYN has available.
At 4 am in December 21st, 2006 my wife woke up to find that she was bleeding immensely. There was blood all over the bed, and we were only a month early. The day before we were in the emergency room but a typical ultra sound found no issues others than my wife had high blood pressure. The suggestion was to have an emergency C-section which could complicate our daughters growth or to get bed rest. As no problem seemed to be found we went home for bed rest. By 5am we are in a hospital room waiting for a gynecologist to check in with us. While a nurse tried to put a monitor on our daughters head through my wife, it only caused more bleeding. By 9 am we are rushed into surgery with me waiting in the hall, my wife terrified and nobody telling us anything.
As I sit in the hall watching doctors and nurses running back and forth from this room, I hear my wife yelling for me, and doctor’s voice booms, “Minnie if you don’t calm down I will have to knock you out”. Ten minutes later a doctor is wheeling a tiny specialized gurney with a white blanket over our daughter. She was rushed to the NICU unit at Saddleback Women’s Hospital.
Over the next hour we come to find out what happened. My wife and daughter suffered from a condition called Vasa Previa. This is where the umbilical cord does not form properly and instead all those open blood vessels are spread throughout the uterus like a hand or a glove. It blocks the cervix, so when the nurse thought she was placing a monitor on our daughters head she actually ruptured blood vessels. This condition can be found at with a 4D color dopler test that can be given at the OBGYN. The mortality rate for our daughter was now at 95%, with my wife at 70% due to blood loss.
Our daughter was in the NICU and received several blood transfusions, we were told she would not live three days and we should plan for the worst. As a result of the blood loss her kidneys shut down and she was not making urine. She swelled up to the size of a large watermelon. At being born at only 5 pounds you can imagine how big she got. All the fluid they were giving her was not going anywhere, so one of the doctors decided to do a tap on her stomach and pulled out a liter and a half of liquid. As a result, Christmas morning our little Emma peed for the first time. She also opened her eyes and looked right at me.
Due to the blood loss, Emma had a seizure which has led her to having Cerebral Palsy. My girlfriend and I went to get her birth certificate 2 weeks after she was born but it was not there as the hospital was expecting a death certificate instead. We knew she would live so that day we were married, and have been together happily ever since. We were told after a few weeks that our daughter would be mentally retarded, not be able to walk, and have difficulty moving and communicating. With the help of her school, our dedication to family and each other, Emma walks with a gate trainer, and has her own wheelchair. She has a stander unit to help stretch her legs for when she walks, but has no problem crawling. She can even walk along the furniture on her own, similar to a toddler cruising. She talks with a few words, her first word being Dad, mostly she uses sign language. In the last two years she has had dialysis and is awaiting a kidney transplant. She has suffered with seizures, many times thinking they are funny although they scare the life out of the rest of us. Raising her is not difficult to us, as it is all about routine, but it does make our bonding as a family stronger.
The toughest parts are financial, as many of her needs are costly. This pretty much takes away most family vacations. The second is the stares from people when you are wheeling her in her wheelchair. It’s not the children, but rather the adults that seem to do this making it appalling. I’ve had a mother with her children walk by, and one of her kids asked what was wrong with her. The mother was offended by what her child said and started to apologize. I cut her off and told the child that he was right to ask, and explained in simple terms that Emma couldn’t do certain things. He held her hand and gave her a hug before they left which made her day.
We do our best to have Emma experience everything she can, treating her as normal as possible. Recently Make A Wish graced us with a theme park vacation allowing us to stay at Disneyland Hotel with two days at Disneyland and various other amusement parks including Knott’s Berry Farm, and Universal Studies. She enjoyed the haunted houses at all places, as well as the rides as she is a little daredevil. The best part was at Disneyland trying to find the princesses, in particular Rapunzel her favorite. We missed her the first day and managed to find her with 15 minutes to spare on the second day. What did this actress do to make it so special? She closed ten minutes early, had a one on one with our little girl, then held her hand and walked her through the park. Our daughter never took her eyes off her.
How does all this affect our other kids. Mixed feelings to be sure. They enjoy having a sister and are very protective of her, but get annoyed as brothers and sisters will over their younger sibling. She gets into their stuff at times, and enjoys spending time with them, from wrestling to sitting on the couch playing a game.
Raising Emma is a daily experience. Not only do you get to see the world through new eyes but many things are just incredible to her. Similar to raising any other child with a few exceptions. Emma has a G-tube implanted in her stomach as most of her food intake is in liquid form as she has trouble chewing and swallowing. She does snack on junk food with her brother and daddy though. She also has a peritineal catherter implanted for at home dialisys treatments 6 days a week. When we go any place it is always with a backpack that has been converted to a diaper bag. In it, are extra bibs as she drools, diapers of course, wipes, a few magazines as she likes to flip the pages and look at the pictures, and emergency seizure medicine. Mom an Dad hardly get to go out together but thanks to a few trusted individuals who help us from time to time we do get a couple of date nights a year.