Hand to Hold's Official Blog: Written by Parents for Parents

Having Faith is a Special Need

Something many preemie parent’s have to deal with is the chance of long lasting effects, such as mental disabilities. Although Drake’s reasons were different than most preemies, we too were faced with the chances of having a child with special needs.

During my pregnancy I had some hormones come back high, putting me in a higher risk category for Down Syndrome. My doctor sent me for a level II ultrasound at 19 weeks. The doctors felt at that time that Drake was about a week behind schedule in his growth. The doctors said he did not show any markers for Down’s but he did seem to have a small chin (micrognathia) and they couldn’t tell the sex. They labeled it ambiguous genitalia saying the baby’s genitals weren’t formed properly. They did an amniocentesis to determine sex and do some genetic counseling. They suspected Smith Lemli Opitz or Congenital Adrenal Hyperplasia. They sent us to genetic counseling and prepared us for the worst. They said the odds of us having a child with special needs were very high. They tested for Smith Lemli Opitz and did some testing for all sorts of chromosomal abnormalities as well. We were scared to death of what we were facing. We both cried a lot that day, but we kept saying there is a chance that all will come back normal. I remember the counselor saying how sorry they felt for me. They asked me at that time if I wanted to terminate my pregnancy.  I told them that was not our wish, after all we went thought to get pregnant we would handle whatever we were given. As I tried to come to terms with what we were facing I still just kept telling myself it can still come back normal. Later, after a very hard wait, all the tests came back and so far Drake didn’t have any of the things they tested for!

Of course the doctors said they would keep a close eye on his growth and would want to have a neonatologist there for his delivery and do more testing after he was born.

At 27 weeks we noticed a huge drop in Drake’s growth so we were again sent for a level II ultrasound. At 29 weeks when the level II was preformed they confirmed his growth way behind schedule. They checked the blood flow between him and me and found it very poor. I was admitted directly to the hospital that day. All the doctors said I would deliver soon and they transferred me to hospital with a higher level NICU. Most expected it to be within a day or two. I lasted three weeks and Drake grew another ½ pound! Almost every day of that bed rest somebody would come talk to me about the chances of Drake being a special needs child.

Despite all these challenges we were winning. One challenge we would not win was the chance of giving birth vaginally. We gave it a valiant try but ended up emergency c-section.

A few days after Drake’s birth they discovered he had bleeding in his brain. It is not uncommon for preemies to have brain bleeds but these were different than what they typically saw. They were in different areas of the brain, they could not even assign a grade because they didn’t even know for sure what they were dealing with. They still do not know what caused them. They suspected some sort of trauma during the delivery; perhaps he lost oxygen for too long at some point, trauma during delivery or moving me from table to table?? They even suspected a blood disorder thinking his blood wasn’t clotting, which led to more genetic testing. They measured his head several times a day, did ultrasounds of his brain, x-rays and CT scans. They did not feel they needed to intervene with surgery just yet. The hope was the bleeding would stop and the fluid would be reabsorbed. Any parts of the brain that may have been damaged could possibly repair itself and if it couldn’t he was a baby and hadn’t learned much yet so he could perhaps retrain his brain to think a different way, like stroke victims. The main areas of concern were speech, sight, and emotions. I remember sitting in the meeting with all the doctors and nurses about our case and they all prepared us for something to be wrong. I remember repeating to them over and over, this can all resolve itself and be nothing, right? They said they can’t tell me that and that they leave the optimism up to the parents. I can’t even recall how many times I said it would resolve itself and be nothing. During the remainder of his stay in the NICU not much changed with his brain bleeds, the bleeding had stopped and appeared to be resolving but it would take time.

After Drake went home he was evaluated by physical, speech, behavioral and occupational therapists through my states early intervention program. He is evaluated by the county nurse every 3 months through the county’s early intervention program. He goes to his NICU clinic follow up every 3 months and is evaluated then as well. We also go to the neurologist every few months. To date, although they all like to remind me we aren’t out of the woods yet, he is not showing any signs of any disabilities of any kind.

I have all the faith in the world that he will be just fine. I am not suggesting that you not listen when doctors tell you something is wrong or may be wrong. You want to listen and learn all you can but keep in mind that doctors will usually try to give you the worse case scenario and there is always room for miracles.

Drake is now almost 9 months old (7 corrected) and the only “special needs” he has required so far were parents that believed in him.

Comments

  1. I have a question…my daughter was 27wks and she had a grade 4 IVH PVL on her right side (motor skills area) she is showing signs of CP, she bows in her left arm and keeps her left tumb tucked in. At 9mnts 6mnts adjusted she is no sitting just started rolling and loves standing with assistants. Does he shows small signs of anything? also have they said about where the bleed was…this is a great story!!!! He is sooooo cute.

  2. This is such a great story! It is very similar to one of my twins, Sophie. They kept telling me she would have all of these issues and she’s 19 months now and they have “kicked her out” of EI because she is doing so well. No signs of delay. Makes you second guess the equipment these docs are using. Or maybe it’s just that our babies know more than the docs. Good for you!

  3. Julianne says:

    To read from his chart exactly.
    Significant head bleed confirmed. Has bleed of R caudate nucleus, L occipital lobe, L parietal lobe, R temporal lobe, R occipital lobe, R parietal region.
    So basically the whole right side and part of the left.
    There are a lot of notes on this but most talk about risks and possible reasons but the one to note is it says abnormal locations for a preemie baby. So it’s hard to compare I would guess although CP is one of the risks we faced but they are more concerned with speech and sight. Notes say risk of blindness. He was also on phenobarbital to prevent seizures but he never had any.

    But no, so far he shows no signs of anything at all. He seems to see just fine and although he isn’t talking yet he babbles and laughs. Drake rolls, spins, and scoots but doesn’t crawl yet, he can stand assisted and he can sit but he started sitting alone a little after 6 months corrected. They say we won’t truly be out of the woods for many years but so far they are impressed with his development.

    My prayers to you and your daughter to overcome your challenges. Stay positive and just give her all the love in the world.

  4. My story is a little bit different from yours, but ended up with the same ending as you 🙂 , my son was born @26 weeks and 1lb4oz my water broke at 16 weeks, I was told almost everything you were and then some, my doctors gave my son NO chance to survive and even told me to abort him at 23 weeks. I refused, problems in my pregnancy started at 12 weeks, and from then on I was told he had no chance to survive, and if by “some miracle” he did he’d have sever physical deformities, and they pretty much guaranteed mental disabilities. My son is now 18 months old, and aside from some issues with his vision, and hes a little behind in his skills, but over all he is the happiest, healthiest little guy!! Its been a long road to get to today but for a baby “who had no chance of surviving” makes it all worth it. My son, your son, and every other preemie whos fought for their right to live are here for a reason! and I most definitely think the love of their mothers who are told theres no chance (but they never give up their hope!!) give them all the reason to fight and survive. And I have to say your son is soo cute! i got to the end of you story and saw the picture and he is simply adorable!!

  5. I am so happy you and your son were able to prove the doctors wrong.

    A long road but one worth traveling! 🙂

    Drake is now 17 months so they are close in age. He is still doing great and started walking this week. 🙂

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