Note: I’m leaving the names of staff and hospitals out of this entry for legal reasons. You can still get the full story, so please read on.
Complete Placenta Abruption
I am 26 years old, and I’m the father of a child with cerebral palsy. His name is Tristan, and he’s vibrant and full of life; unlike his prognosis by some of the doctors his day of birth.
September 13th, 2007 my wife was at the hospital for an iron transfusion. Her iron was low, and that concerned our doctor. He kept her overnight and though the staff on hand jested about his over cautiousness, I thank God he did because if she were at home I fear they both would have been lost. It should be noted here Tristan had no prior conditions, he was 100% healthy, and actually the tech who did one of his last sonograms said he was one of the most beautiful looking babies she’d seen (medically speaking of course, plus he’s just handsome) no defects whatsoever. Tristan’s last sonogram revealed to the tech that his mom’s placenta looked “old”, though she couldn’t explain why that would be.
I visited her at the hospital that night, and I had an overwhelming feeling I shouldn’t leave. I had to work the next day, so I did the smart thing and went home. I was awakened at around 5:00 in the morning, September 14th, 2007 to my wife’s mom telling me I needed to get to the hospital. Carefully, yet nervously I drove to the hospital.
To my surprise, there was no one to talk to at the unit’s desk and when I walked into her room I saw a scene that seemed out of a horror film. There was blood everywhere, and the nurse on staff had told me that her placenta had abrupt. While she kept an eye on the monitor and talked to my wife, I watched the heart monitor slowly decrease, I asked the nurse how long he could stay like that, and she answered with “I don’t know”. Later we found out it was a complete separation and that during surgery our son had actually died. His Apgar score was 0, 0, and 4, Apgar score is a number system used to determine how well an infant is doing right after birth. Read About Apgar Scores here. So we were given little hope from the start. We were told by the doctor that there was no obvious medical reason why her body terminated the pregnancy, just that her body, for some reason, was done with the pregnancy.
Our son was transported to another hospital that had better staff for pediatrics. He spent the next month fighting for his life. When he first arrived, he was given numerous medications; including, Phenobarbital (the highest dose a human being can handle, not just a child), dopamine, and a few others. He had a central line in his head, they then later transferred to his abdomen, his IV site infiltrated, causing his skin to scar on his hand, a feeding tube NG (Nasogastric) tube, respirator, a warming bed (he couldn’t regulate his temperature), and numerous tests including an ECG (electro cardio gram) to monitor his heart, EEG to monitor his brainwave activity(electroencephalogram), CT (Computed Tomography) to show the damage his brain suffered during the incident, and sweat tests to rule out Cystic Fibrosis.
His cardiologist recommended a sonogram to get a better look at his heart. They found that he had an atrial septal defect (ASD), Tristan’s heart had a “hole” in it, which should normally close as an infant begins to grow, and is fairly common at birth. They wanted to keep a close watch on Tristan’s heart so they recommended a sonogram at his 3 month mark, and then another one a year later.
The EEG showed abnormalities, that he would have possible seizures without medication. Thankfully, he’s only had two seizures since the day of his birth, one at birth and the other after his one year mark.
He had problems in the beginning with his ability to “suck”; he couldn’t drink from a bottle so we were told he might have to have gastric (G) tube inserted into his abdomen for feeding. They informed us that in the hospital a feeding tube is sufficient, but not practical for parents at home. Again, I had felt that he was going to push through this, and the nurses on staff said to keep trying to feed him his bottle orally (as they did when were not present), until finally, for me, one day he did. It was a huge breakthrough, saving him a surgery and keeping our hopes alive, that he might be coming home soon.
The Prognosis
He was diagnosed with microcephaly (small brain), and an atrial septal defect at birth, and by the time he was 6 months old, was diagnosed with Cerebral Palsy. We had high hopes for him, as any parent would, and though seemingly discouraged by a grim prognosis, our son is quite the opposite. My wife was horrified, as was I, when told by a doctor that he probably wasn’t going to do much more than what he was then, eyes closed and relatively unresponsive to stimuli. He hadn’t opened his eyes for the first 2 weeks and I had to reassure my wife that he was pumped full of drugs, and that I don’t think anyone would be opening their eyes after all the trauma he went through and to then be full of medications, and be expected to respond? One of the side effects of Phenobarbital is sleepiness, and I felt that he would eventually pull through. Slowly but surely, he started healing. After a month’s worth of time in the hospital, our son came home.
Healing Process
In my opinion, Tristan had the best team of doctors this area could muster. His doctors consisted of a pediatrician, pulmonologist, cardiologist, neurologist, and countless staff of nurses to help in his healing.
After his first time coming home with us, it was a struggle. We were so concerned with his well being we didn’t get much sleep. He was given a RX of Phenobarbital, to keep his seizures from occurring, and that could be difficult to give him at times because of his inability to drink large quantities of formula.
We also learned he had a reflux problem, which apparently is normal with infants. It happens when the child’s esophagus is tight, and doesn’t close to keep the acid down, causing regurgitation. Not good, when you’re feeding your son his medicine, then later expels it. Tristan was given another RX for his reflux called axid.
A couple of months later, he began to really grow and drink larger quantities of formula. This made us hopeful again, because though he was drinking formula, if he didn’t drink enough, he’d still have to have the NG tube inserted.
As Tristan grew, he had muscle spasms that would keep him from being able to eat, or function for the most part. Not quite seizures, but rather locking of his muscles. So his neurologist prescribed clonazepam, a muscle relaxer and also works as an anti-seizure med.
Note: Now that he’s two years old, he drinks and eats everything he can! He still has a hard time with his chewing (he tends to tongue thrust), but he wants and tries to eat everything he sees! We also switched his anti-seizure medication to Trileptal (less affect on young children, studies show Phenobarital can drop IQ points by up to 8, and we just didn’t want to risk it).
Therapy: Physical, Occupational, and Speech
As part of the healing process, Tristan is involved in therapy. He has a speech, physical, and occupational therapist. In the beginning it was hard to see the difference between speech and occupational, but as he began to get older the differences became clear.
His speech therapist works on his communication, utilizing toys, electronic devices, spoken word, signing, and feeling to get response for the things he wants or needs, and also on his chewing control. Occupational therapy deals more with his everyday hand-eye coordination, such as being able to grab a toy or pull a spoon to his mouth, and also deals with his chewing control. Physical therapy is more about his large motor skills, things like walking, sitting up, and holding his head up are part of this therapy.
At home we tend to utilize the things they’ve shown us at therapy, and I have to be honest here, his mother is a God send when it comes to his therapy. She works extremely hard with him, making sure he’s stretched day in and out, and that he’s working on his motor skills, both fine and large.
He’s getting to be extremely strong and he’s only 2 years old and 3 feet tall! So it can be a little difficult for his mom to do his walking with him. Tristan has an assisted walker which is called a TAOS (Therapeutic Ambulatory Orthotic System), and is different than most because it allows him to put all of his weight on his legs without any support of his hands, a bath chair which allows us to give him a bath with struggling to hold him, and a kid cart that serves as a wheel chair so he can sit upright and helps to inhibit his tone (though to be honest he doesn’t like the kid cart at all). We actually just bought a traditional stroller because he doesn’t do well with the kid cart for long periods of time. He likes to move a lot and the kid cart inhibits that, making him angry and unable to sit quietly. Within reason, I think disciplining a child with special needs should be the same as a child without special needs. In other words, I wouldn’t normally allow him to scream his way out of the kid cart, but I understand he’s actually uncomfortable and irritated because he wants to move. The traditional stroller allows him a little more freedom, and it’s lower to the ground (for his eye sight).
Parenting a child with CP
So far it’s been challenging and rewarding to have Tristan in our lives. The only hard thing for us sometimes, is that he’s like any other toddler, he wants to get everything he sees and he gets frustrated when he can’t do some of the things he wants to. He absolutely loves music, he likes to play piano, guitar, drums, anything that creates a sound (musically) he loves. Wonder where he gets that from?
I know most people may not understand this statement, but for me it’s true. I really couldn’t imagine my son any other way, not to say if there were a cure and he wanted it I wouldn’t want him to utilize it, just that I love him just the way he is.
-Ray
The Story of My So
When the idea was presented to write a blog about special needs and parenting by my husband I was a little thrown off I have to admit. The more I thought about it though the better the idea sounded. Over the last 10 years I have dealt with 2 of my children having special needs. I am constantly seeking information on how to help them or new research that will help in any way shape or form. What I have found is a lot of technical stuff, and some blogs by other parents of special needs children. Those blogs have been the most informative of the bunch. Giving tips and clues as to what has worked for them and what may work for us. Since every child is so different not everything will work or even apply.
Alex
Alex who just turned 10 has struggled with ADHD for as long as I can remember, I think it started in the womb. You may laugh at that but I kid you not he has been on the go since then. In the womb he was the wiggle master!! You could watch my belly twist and turn and see body parts poke out for hours on end. I got food poisoning when I was 38 weeks and ended up in the hospital for dehydration and they put a monitor on him and he would not sit still. The nurse asked me several times if this was “normal” for him and I assured her it was. One week later I had a placenta abruption and he was delivered via emergency c-section. I was told that it was a 20% seperation, which is considered severe, but we both pulled through with him being a healthy 7lb 5oz bouncing baby boy. Note the bouncing part. He hasn’t stopped bouncing and going and moving since then. It began with breastfeeding….a natural wonderful way to nourish your child, RIGHT? Not if he is so wiggly and wont stop looking around long enough to latch on. I tried with the help of his dad and my mother for 6 weeks. It would take the 3 of us to get him to latch on and then a few minutes later he would hear something and turn his little head and POP! OUCH! He would break the seal. Now for any fathers reading this portion breastfeeding in the beginning is a very painful experience. Your body parts have to get used to that technique. When that seal is broken let me tell you tears are coming; throw in some post pregnancy hormones and you have a mess of a mommy. So that ended quickly. Alex was a very curious child. He started rolling around everywhere he could by 4 months. He especially enjoyed feet and shoes for some odd reason. By 6 months he was a fast crawler and stander and by 8 ½ months a walker. Imagine chasing something that only comes up to your kneecaps around the house (I am only 5’1 so that tells you how tiny he was). I have been chasing him ever since. He was a normal toddler into everything and a great escape artist. He has the skills of a prisoner able to get out of Alcatraz. He once figured out at about the age of 2 if he grabbed the broom from the kitchen and went into the garage he could use the handle of broomstick to push the button, which he couldn’t reach to escape outside. I will never forget hearing that door open the first time and wondering “how the heck did he do that” and running to put him back inside. Gates and door chimes and locks oh my appeared very quickly! I am telling a little of his younger years to show I believe Alex’s ADHD started early. This is just some background into what I went through as a parent to get to a diagnosis.
School
Let me just say right from the start a lot of ADHD children are labeled as troublemakers. They have a million things going through their heads at once and they cannot turn them off or separate them. It is like having the TV on, the radio on, someone talking to you and reading all at the same time. Even someone without ADHD will have trouble separating all these things. So they tend to get in trouble at school and have a hard time making friends.
Alex was just officially diagnosed with ADHD at the beginning of this year. I was “putting it off” because I don’t believe in medication until all other options have been exhausted. We hit that point in the 4th grade.
Alex is in 5th grade this year. Alex is very bright and his test scores are well above average. He is extremely creative and artistic. Yet he still struggles to get average grades in school. This is because if it doesn’t interest him, he won’t even try to focus. It takes to much energy to do something that he doesn’t even want to do. Part of that is a stubborn streak in him also. I would love to say that I have it figured all out but it is a constant daily battle to keep him interested in schoolwork and to stay on task to get it done. I have tried several medications with him and seen some results. Alex and I are still in that battle. He doesn’t like taking meds that make him feel like a zombie and I don’t either. They also curb his appetite and he is smaller to begin with so I don’t like that. When the medication wears off he is so hungry I think he could eat the house. Working with the school and teachers is a fun experience also. They try and do their best to help him out and so far that has been a blessing. The next few months should be interesting with Thanksgiving break and Christmas break because with ADHD, any changes can really push them to the breaking point. So I look forward to writing about our holiday time over the next 8 weeks or so.
-Adriane
