Pregnancy. It can be terrifying. It can be thrilling. It can be unexpected, expected, planned, or unplanned. It is the beginning of a new phase of your life full of promise and possibility. Parents-to-be consider names for their nameless, faceless beings-to-be. They obsess about the thought of ten tiny fingers and ten tiny toes. The world of the baby-to-be is full of infinite possibilities of perfection. Until a doctor or an ultrasound technician or another medical professional tells you that it is not. Then you graduate to a world where you are escorted out a back door of the doctor’s office so as not to upset the other moms-to-be. Then you are thrust into a world of specialists and tests and unimaginable mountains to climb. It is a world of coping and accepting. It is a world of letting go of the preconceived notion of the bouncing baby you had in your head. It is a world of fearing to love a baby who may or may not survive and then learning to adore the baby who does.
Bernadette Ervin could tell you all this and more. She has been there. At her twenty-week ultrasound, she was hoping – like most parents – to find out whether she was having a boy or a girl – whether to paint the nursery pink or blue. According to Bernadette, “I knew immediately that something was wrong by the expression on the face of the ultrasound technician. I didn’t have to wait long before my doctor came in and confirmed my worst fears. I was going to have a baby with physical deformities due to a condition known as Amniotic Band Syndrome (ABS). ABS occurs due to a partial rupture of the amniotic sac. Fibrous bands of the amnion float in the amniotic fluid and can encircle and trap some parts of the fetus. In a large number of cases the baby is also born with clubbed feet. ABS is also the cause of numerous miscarriages when a band becomes wrapped around the umbilical cord. Of course I was beside myself, and my doctor only said, ‘Please don’t go home and Google this,’ as she escorted me out a back door so as not to distress the other mothers with normal pregnancies. And that is how my journey with a son with special needs began.”
After an appointment during the 25th week of her pregnancy, Bernadette was rushed to the hospital by ambulance. Her son, Jakob, was born one week later. He weighed one pound, 14 ounces. “During that week,” said Bernadette, “I had a lot of time to take in all the possibilities of having such a premature baby…cerebral palsy, undeveloped lungs, brain bleeds and the worst fear of all, that he might not actually survive.”
Jakob was diagnosed with chronic lung disease. His feet were turned in and up due to the clubbed feet, and he lost his right index finger and more than half of his right thumb because of the amniotic bands. The amniotic bands also left him with a ring indentation on his right middle finger. “Everyone kept telling me congratulations,” said Bernadette. “And I wasn’t even sure if he was going to survive the night.”
Jakob spent the next three months in the NICU at University Hospital in Denver. Bernadette attended his care sessions there while also continuing to work remotely for her employer.
When Jakob finally left the hospital, he was on oxygen and required continuous consultations with specialists for his lungs, hand and feet. Jakob also saw an occupational therapist, a physical therapist, a nutritionist and speech therapist. Since that time, he has undergone two hand surgeries and two foot surgeries. He has also undergone serial casting – casts that are changed on a weekly basis – and he has nighttime and daytime braces to help correct the clubbed feet.
When asked what the biggest challenge of her journey with Jakob has been, Bernadette replied, “Not letting him see my fears, worries and anxieties. Letting go of being so overprotective and hovering….letting him be a little boy.” She also referenced the challenges of juggling being a single mom with a professional career and all of Jakob’s doctor and physical therapy appointments. As for the most unexpected challenge, Bernadette says it was going through a divorce and then moving out of the state to be near family, which meant finding the right doctors with the right treatments and regimens in their new location.
Thankfully, even the most challenging situations don’t come without unexpected blessings. Bernadette will tell you that one of the most unexpected blessings is that Jakob has adapted so well. “For the most part, I no longer even think about him being different from other kids.”
Bernadette cites the unending love and support from her family and friends as one of the sources of her strength. In particular, she gives credit to “the amazing nurses in the NICU and all of the guidance and care they gave Jakob and me” and “the therapists and counselors from birth to three services who worked with us every week and never faltered in their courage and optimism.” One of the things she is most thankful for, however, is “the friendship I developed with the nurse who took me in…We are friends to this day, and I feel like she is our guardian angel.” [When Bernadette was unable to move into the Ronald McDonald house while Jakob was in the NICU and she was on a waiting list for two weeks, one of the nurses who took care of Bernadette took her into her home.]
Bernadette will tell you she has learned a lot about herself since Jakob was born and throughout her journey as a mom. “I have learned that I am really tough and a lot stronger than I ever thought I could be and that I love this other person more than I ever thought humanly possible. I have also learned that in order for me to be a good mom I need to make time for myself once in a while and not feel guilty about that.”
Jakob is thriving as well, but many challenges remain. According to Bernadette, “He is very much aware of his physical differences. He does ask tough questions, which always have the ability to take my breath away at first, so I stop and take a breath before I answer. I try to be as honest and loving as I can.”
Jakob has asked Bernadette when he grows up if his fingers will grow back or if his right hand will look like his other hand. “I just take him on my lap, and I hold his hand and I tell him that this will always be his hand and that it will not change when he gets older. I tell him that his hand is beautiful but that it does look different and that being different is okay and that everyone has differences, some visible and some not. When someone asks him about his hand, I try to talk to him about it afterwards telling him it’s okay to say this is how I was born and that it doesn’t hurt me but it just looks different. I also tell him to never hide his hand and that he is beautiful in every way and should never be ashamed. I never say the words ‘you can’t do that because of your hand.’”
As for her advice for other parents in similar situations, Bernadette says this, “Love, love, love your child. It’s also important to love yourself. Self-blame and guilt do nothing to change the situation or to make you feel better…trust me, I know. You did nothing wrong. You were just blessed with a child who has different needs than most, and you can do this. All you have to do is look into their little faces and you will find the courage you need to move forward. I found an online group of parents with children with Amniotic Band Syndrome and joined their e-mail group, which was a huge comfort, especially during those first six months. You will be amazed how many other people are going through the exact same thing. Enroll your child in birth to three or any other program they qualify for. Try to expose your child to other children with similar anomalies or differences.”
Jakob is now five and in kindergarten. His lungs are much better, but at times he requires the use of a nebulizer and is on preventative asthma medication. His hand is functional, and he has adapted very well. His legs continue to cause him discomfort, and Bernadette still consults with an orthopedic surgeon. Future surgeries are likely. Bernadette is quick to point out proudly that Jakob is a well-adjusted kindergartner. Said Bernadette, “He really is just like any other five-year-old boy – he loves his superheroes, playing with Legos and jumping and climbing. Jakob participates in baseball, Tae Kwon Do and gymnastics. He has a lot of friends and is happy.”
As for parting thoughts, Bernadette told us, “I have learned so much from my son, and I am in awe of his unfaltering spirit and determination. As I watch him build an intricate Lego spaceship filled with super ninjas, he catches my gaze and smiles and proudly says, ‘I don’t even need anyone to help me with this Mama,’ and I know he is going to be just fine.”
So congratulations to Bernadette, our newest Kick-Ass Mom honoree. Our hats are off to you for your courage and perseverance on behalf of your son. We don’t claim to know a lot here at Mamas Against Drama, but we do know that when it comes to the mom lottery, Jakob certainly seems to have picked the winning ticket.