anyone have a child who had a long hopspital stay at birth, and now has developmental delay??

Ali - posted on 10/01/2011 ( 15 moms have responded )

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I have a wonderful 10 month old son. He developed feeding problems at birth that turned out to be congenital heart disease. To cut a long, long story short- he had open heart surgery at 2 weeks old and spent his first 4.5 months in hospital- most of it in ICU. He is now doing well and his heart is showing signs of healing. He still has a feeding tube, and a stoma- (which will be reversed soon- yay!!)
Anyway, my question relates to his development. He has hypotonia (low muscle tone) and is developmentally delayed. When he came home, he was probably worse than a newborn in terms of his gross motor development, he didnt have head control and was really floppy. WE're working wth physio and getting some progress- he can now roll. He is still floppy and can't sit at all yet. Otherwise his development isn't too delayed- he is happy and smiley, laughs and babbles, he's a great little boy! He manages to eat solids and can hold things and transfer thm from hand to hand.
I just have worries about how floppy and delayed his motor development is. I wondered if any of you have experiene of a term baby who ended up spending a long time being very ill at birth, and how this impacted their development. I don't knoe how much of this is just to be expected, and how much will be reversible.
After all he's been through, I am so happy to have him home and doing pretty well, but I'm now starting to think about his future and what might lie in store for him. i appreciate any advice/stories from anyone who has been through similar!

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Sarah - posted on 01/03/2012

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It's normal for babies who have undergone any sort of medical difficulties (even minor issues, let alone something as major as CHDs) to have developmental delays. My daughter has Vesicoureteral Reflux (now surgically repaired) and is still dealing with delays almost 6 months after her repair due to issues with weight gain (she's only 19 pounds at 17 months) and her medical experiences. All you can do is address the issues as they come up and work to help catch them up. These delays may be obvious now, but with proper physiotherapy (or speech, or dietician, etc) babies can learn all these things, and likely by the time they hit toddlerhood (or sometimes school age) you'll never notice and difference between him and his peers. Good luck with your son's recovery process!

Heather - posted on 12/28/2011

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I have been there too....my son was born 38 week term repeat C-sec. Basically he had Pulmonary Hypertension and we put on many med from nasal canula to the Oscillatory machine (100 breaths a min) Oxotoxic drugs were administrated my poor baby didn't have a chance...I was thinking that and so were the Docs as I found out later. To make this short he is Deaf, ADHD, Bipolar,sensory integration and tactile issues Autism-PDD,MR,DD,OCD,and ODD. He has been on meds since he was 3. I could go in-depth if you want to compare notes on meds, behavior, whatever because both families would benefit the way I see it. Hope to talk to you soon. :0)

Krystal - posted on 12/26/2011

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I had twins 14 weeks premature. We lost one at 21 days old and our other one, Bricen, was in the NICU one day shy of 3 months. He had heart surgery, his lung collapsed, he developed a bilateral grade three brain bleed, hydrocephulus (got a shunt), PVL, and hernia repair. They dx him with low muscle tone while he was still in the NICU. He is 6 months old now and he smiles and interacts with people. He still can't hold his head up due to it still being large and he hasn't started crawling or anything yet but he smiles constantly. He has had physical therapy since he was in the NICU. His physical therapist just seen him a week ago and said she isn't noticing the low muscle tone anymore and he is still on track for his adjusted age. I don't know what his future holds I just pray for the best. His physical therapist has a lot of faith that he will progress very well develpmentally as soon as he gets control over his head.

Hannah - posted on 12/25/2011

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I just happened to stumble across this website and I'm so happy I did. As i type this, I am in my daughter's hospital room. My daughter has a chromsome duplication, congenital heart disease, and a lot of other medical problems. She is now 21 months old and we (I say we cuz when she's in hospital I move in too) have been here a total of 9 1/2 months. Our longest continuous stay was 3 months. She didn't sit up till she was 14 months old. Although she is extremely delayed, I am happy and thankful everyday for how far she has come.

Ali - posted on 12/16/2011

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wow, it sounds like your little one has had lots to cope with too- I think it's amazing that they can learn to move/talk on top of everything else! Daniel is now sitting (he's 13 months now) so i'm lookig forward to sdeeing how much more he can get up to soon!

Brittany - posted on 12/13/2011

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My son was born at 24 weeks and spent 16 months in the hospital due to his lungs and heart problems. He is now 2 and a half and has been home for 1 year and 4 months. He has a g tube and a trach but that will be gone soon. He wasnt sitting up when he came home or anything but now he can sit all by himself, crawl, talk alittle, and he is starting to stand with help. Its taking him awhile to catch up but he is so hang in there it gets better.

Ali - posted on 11/09/2011

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thanks for the replies, good to hear about others who are further down the road than us! Daniel just waved for the first time today, won't stop in now! I think I apreciate all these little milestones much more this time than with my first son. He's able to sit for a few seconds now too so it might not be long before he can sit up and play!

Roopa - posted on 11/08/2011

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My son was born in Dec 2008 was born at 29 weeks and was in ventilator for 3 months , his lungs was not developed and one of his lungs was collapsed. To develop his lungs Dr. gave steriods after which when he was 2 months old he was diagnosed with hydrocephalus he started breathing when he was 76 days old. Many a times he had stopped breathing Dr used to stimulate him and make him breath. Dr even suggested many a times to take away the baby because he will not survive, he even had meningitis i.e severe infection in brain. Today He is living with Vp shunts on both the sides of his head, so far he has undergone 4 surgeries. He's now 2 years 10 months old with delayed milestone. He still crawls and yet to start walking, started to talk hums all rhymes, songs loves music. He's a miracle kid....Mothers of this kid of a kid can keep in touch.
Roopa
Roopasrinivasulu@gmail.com

Roopa - posted on 11/08/2011

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My son was born in Dec 2008 was born at 29 weeks and was in ventilator for 3 months , his lungs was not developed and one of his lungs was collapsed. To develop his lungs Dr. gave steriods after which when he was 2 months old he was diagnosed with hydrocephalus he started breathing when he was 76 days old. Many a times he had stopped breathing Dr used to stimulate him and make him breath. Dr even suggested many a times to take away the baby because he will not survive, he even had meningitis i.e severe infection in brain. Today He is living with Vp shunts on both the sides of his head, so far he has undergone 4 surgeries. He's now 2 years 10 months old with delayed milestone. He still crawls and yet to start walking, started to talk hums all rhymes, songs loves music. He's a miracle kid....



Roopa

Roopasrinivasulu@gmail.com

Jolie - posted on 10/31/2011

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Hi Ali: I have a child with Down syndrome who also spent the first 10 weeks of her life in the PICU. First it was NICU, then 1 week home then 10 weeks in PICU. She was born with 2 different classifications of heart defects. She is 5 yrs old now and other than the fact she is not ambulatory, you would not know she had a heart issue. Her heart is repaired.
Did your son suffer any health set back in the hospital? The reason I ask is my daughter suffered from sepsis which ended up giving her bilateral blood clots in both legs. I think that has contributed to her not being able to walk yet. I believe that with consistent physical and occupational therapy, your son will achieve his milestones and cach up with his peers by the time he is 3 or 4 given that you believe he is cognitively on schedule. Our little heart patients always seem to lag behind a bit....especially if they have been hospital bound for more than a month.
Even with my daughter's DES, she should have been walking by 2 or 3 and she hasn't.....so, I'm blaming it on long-term hospitalization.

Jolie

Ali - posted on 10/20/2011

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thanks laura, wow that sounds like great progress your daughter has made, thats encouraging to hear. I spoke with his paediatrician at our last visit and she thinks (from a very brief assessment) that his delays are all gross motor, so just related to muscle weakness from being too ill to use his muscles. your story gives me hope for daniel too, it's difficult to picture how he will be in the future and I don't know anyone who has been through similar. It sounds like your daughter has had similar challenges and is doing great :)

Laura - posted on 10/19/2011

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my daughter was born with multiple problems and had open heart surgery to correct her heart defects at 3.5 weeks old. She stayed in the hospital for nearly 3 months and then she was in and out with illnesses frequently for the first 18 months of her life. She didnt smile till 6 months, she didnt take anything orally till 9 months, she was like a new born baby until she was around 9 months old and didnt even roll till after her first birthday. We werent sure what to expect from her because she is very small and has a number of problems but we worked hard with physio and she eventually learned to sit alone at around 14-15 months, she walked at 23 months and now at 32 months she is climbing stairs with help and walking / trying to run. She is still behind her peers but she has made fantastic progress. My advice to you is to keep up with the physio, make sure you make exercises part of play and keep challenging him to push himself.

Donna - posted on 10/03/2011

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My daughter just turned 5 years old in September. When she was born she turned blue in the nursery at the hospital. They took her to the NICU. She stayed there for 3 months. When she was 2 months old she had a VP shunt put in. The first time I held her she was 2 1/2 months old. She was also born with Club Feet. She was diagnosed with Dandy Walker Syndrome (learning disability, slow motor development, low muscle tone, developmentally delayed). So she does not walk , talk or eat anything but baby food. Also mentally she is only about 11 months old. I hope this is helpful in any way it can be. I will keep your family in my prayers.

Ali - posted on 10/02/2011

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thanks! good to hear from someone else who's going through similar things- I just don't know anyone else in the same position. Good luck to you and Ethan!

Kendra - posted on 10/01/2011

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When I gave birth to my twins one of them, Ethan, was born with OEIS complex, to make that short...his intestines and bladder was on the outside of his bladder he has a colostomy bag as a result of being born without a rectum and he has spina bifida...I live in Nebraska and had to deliver in Kansas City, MO...6 hours from home...he had surgery when he was 3 days and was in the NICU for 2 months when he came home he was really floppy and had delayed development as well we are working with a bunch of drs and have many exercises he has to do...he is now 9 months old and doing better...he is still very far behind his twin but everyone keeps telling me that he will be able to catch up just not as fast i just have to let him develop at his own pace and not try to rush him he is still young and even babies without health problems sometimes have hard times developing as fast as other babies...my advice for you is to just be patient and dont overwhelm yourself thinking that he is so far behind...he will catch up and develop normally it just might take him a bit longer than others....just stay strong!!

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