Has anybody had a premature baby that still has long term health problems/disabilities?

Eliabeth - posted on 01/28/2009 ( 29 moms have responded )




Hi, my son Adam has a lot of health problems and disabilities, is anybody else facing this?

Her is Adams story,

My son Adam was born at 25wks weighing 1lb 14.5oz, he was in nicu until he was 22wks old and went home weighing 7lb2oz. I didn't get to hold him at all until he was 4 weeks old, and he was still on the ventilator, so he was hand vented so i could finally get my first cuddle.

Adam had a very long stay as he suffered major setbacks.

When he was 2days old(on st valentines day) he suffered a grade 4 bi-lateral brain bleed, we were told that that level meant he would definetly not survive, and he was given just 1 hour to live,.

We had Adan baptised with all our family present, but Adam fought on and made it through the night and the next day and the next!

When Adam was 10 days old he contracted MRSA from a member of staff, we were so so angry, he was in an incubator and supposed to be protected! He was so tiny his weight had dropped to 1lb 3oz and when he was 14days old the MRSA had infected his blood, causing sceptacemia, then infected his Cerabal Fluid, and caused menegitis.

Once again we were told he would not survive.

But my little miracle boy fought on!!

He developed N E C when he was 8 wks old and had to go back on TPN, he had been having 1ml of milk an hour bless him,and was facing surgery, but improved with meds, he then develeloped Liver problems and had to keep having Hyda Scans the doc's thought it was billiary atresia, but was put on new meds after seeing a liver specialist.

Whilst all this was ongoing Adam was still ventilated, he finally came off the ventilator and onto C-PAP AT 6wks old

Due to the brain bleed and the menigitis Adam developed severe Hydrocephlaus, which worsened drastically so he was having lumbar punctures every day, until he detoriated badly and was re ventilated,Adam had to be transferred to a different hospitial for brain surgery,and had a Ventricular Peritonal Shunt fitted at 10wks old, his pre op weight was 3lb 2oz!!! ( to permantly drain excess fluid from the brain ventricles to the peritional cavity in the tummy) This surgery is never normally done as a neonate, babies are usually home for some months after NICU discharge before it is attempted to allow them to grow and become stronger, unfortunatly, without immediate surgery Adam would have died.

Immediently after the surgery we knew Adam had suffered major brain damage, he was rigid and colud be lifted in his incubator like a board.

Adam developed an infection after the surgery and it was touch and go for the next week.

After 2wks in that hospitials NICU Adam was transferred back to his original NICU for ongoing care.

Just days later Adam's breathing deterioated, the ventilators were no longer supporting him, we had many 'quiet room' chats and were told Adam would never survive, and if he by a miracle did survive, he would never leave hospitial and would die within his 1st year. We were told to withdraw treatment as we were causing him suffering.

That was the worst day of my life.

We left the hospitial to go and buy Adam some clothes, i wanted to be able to bathe and dress him afterwards.

Whilst away from the trauma of the hospitial, my husband Dave and i actually talked about what we wanted, what we thought we should do for OUR son, amd decided that we were not god, Adam was keeping his heart beating himself, so if his heart stopped, we would let him go, but as long as it kept going, so would we!

Adam has never worn the clothes we brought :D though i do still have them.

The hospitial called in Professor Neil Marlowe who had been usuing a new ventilation treatment at his hospitial called Nitric Oxide, Adam was the first baby in Nottingham that this was to be used on, Unfortunatly only one nurse had used the equipment, which was very different machines and HUGE gas cannistors so the staff had to be trained as they nursed Adam.

Adam was on the nitric oxide for the next 2wks, during which time, he did begin to improve, then he had to have a broviac line inserted as all his veins had colla[sed and the could nop longer gat any linees in at all.

Adam was supposed to be took to theatre for this, as it involves passing a line through the jugular vein in the neck, and down into the heart area, but everytime the surgeons went to swop Adam onto standard ventailation as the Nitric Oxide couldn't be used in theatre, Adam suffered massive bradacardias and apneas.

The surgeons couldn't move Adam, so they ended up turning his bay into an operating theatre, and did the surgery on NICU!

After this, now Adam could get meds and nutrients again, he improved quite well, and finally came off the Nitric and back onto a standard ventilator, then onto C-PAP, then finally onto nasal prongs.

Adam developed R.O.P (Retinopathy Of Prematurity) due to the high levels of oxygen he had had for such a long time and had laser surgery (back on the ventalator!) but recovered well.

Adam finally left NICU after 22 very long and stressful wks,

Due to the brain bleed, menigitis, Hydrocephlaus and the brain surgery Adam has Quadraplegic Cerebal Palsy, all four limbs and trunk are affected, he has the physical abilities of approx 4-6wks of age, but his mental understaning is approx 2to 4 yrs, this is extremely hard to guage due to limitations.

Adam also started having seizures whilst on NICU which was misdiagonised until after he want home, he was then put on carbamazapine and his last seizure had been when he was 11mths

Because of the long term ventilation Adam developed BPD (bronchal pulmanary Displasire) and is STILL on oxygen, although he only has it all night, whilst asleep, when poorly, or tired, he is 8yrs old in February

Due to the meds he had, gentomycin and vancromycin, he has a hearing condition called Audiotory Neuropathy, and is also a bit deaf

Due to the ROP, he is exrtemely short sighted and can see from approx 6ft with glasses.

Because of all the various medications he had he suffers mutiple allergies mainly skincre produts, some foods, and medications, hospitial tape and is even allergic to the glue on round chest leads, he can have square ones though, different glue, lol. and is now allergic to penicillian and vancromycin,( too many doses while so tiny!)

Adam has had many hospitail admittances, mainly for lung problems, but these are few as he gets older and stronger.

He suffered a major illness 18mths ago, his Shunt had failed, but after surgery he got MRSA which again went to his Cerebal fluid and again caused mengitis,and he developed Toxic Shock Syndrome, due to the MRSA in his blood, and suffered organ failure, we were again told he wouldn't survive.

He was in hospitial for 6wks then his shunt failed again 10wks later, but was home after 1 wk, then readmitted 2 hrs after getting home, with seizures, Adam is now back on Carbmazapine, and his seizures are controlled.

When Adams shunt failed, he fell into a coma, and due to the Toxic Shock Syndrome, he suffered a Stroke, which has left him further disabled, he now has no central vision, only pherical, and his Cerebal Palsy has worsoned, he now has Baclofen, and Botox injecxtions to his upper and lower arms and his hands, but no longer has any control over his upper limbs and can no longer use his hands or hold toys.

Adam is not healthy, not by a long margin, but he is the happiest child anybody will ever meet, he is full of character, a real cheeky devil with an eye for the ladies, lol, Adam is well known that he 'does not do' crying or sadness he cries twice a year when he has his botox injections, and only if he is really really poorly, (honest truth!!)

He is an amazing little boy, who has proved many doctors wrong many times, i would never regret any of the decisions we made during Adam's life, as Adam was making our decisions for us.


Mindy - posted on 11/19/2009




Hi I too have gone through s little of what you have my daughter Sidney was born at 32 weeks at 3 lbs 13 oz so not to bad of a size. I had a emergency c section, When they took her out she passed all the tests. She was in the NICU and doing really well the doctors said then all the sudden at 1 week after her heart rate skyrocketed over 200 so the thought she had an infection they checked that out and everything was clear.then they noticed some seizures so they did a ultrasound on her and found she had a grade 4 bleed o both sides of the brain causing lots of damage. They to told us she would not make it, maybe a year at the most. Well she just turned 1 a few weeks ago and she is good she does have a lot of issues. Like she does not feed on her own we are getting a G-tube put in next month which I am really nervous about, She is also Cortically visually impaired we did get some good news in that her hearing is good. She had a VP shunt put in at 6months and she still cannot hold her own head. she is working at it though. She does she signs of CP in all four limbs. It has been such an emotional rollarcostar. But we love her som much. My husband and i said the same thing to, when the doctors asked us if we wanted to take the ventilator off we said yes. They told us her lungs were fine they just had her on it because of the seizure meds. but if they take her off she might not make it. We thought if she was meant to be here then she will breathe on her own, they also asked us if we wanted then to stop feeding her and we said no, It is not up to us to decide whether she lives or dies that is in god's hands.

your little guy is a definate little fighter too!!

Jo - posted on 02/05/2009




Wow!! What an amazing little man!

Our story is a little like your own....

Jack was born on Valentines Day last year at 28 weeks after his placenta ruptured. He weighed 2lb 11oz - a good size for the gestation. He had been born not breathing and there were minutes when they could not get a response.

Eventually they got him back and he was taken to NICU where we were told that he'd suffered massive brain damage and wouldn't make the night.

Long story short - you've been there! - We brought Jack home 11 weeks later and he is now a year old next week!

We have had no official diagnosis but he has increased tone in all for limbs and decreased in his trunk. We do know what this means and have only recently come to terms with the fact that there will be many things our boy can't do. Jack is a healthy boy, he came home without oxygen and has had no repeat visits to hospital, for which I'm very grateful! Recently he was diagnosed with reflux and epilepsy which are now under control thanks to the meds. We are on the waiting list for botox so I would be very interested in your opinion on it????

Obviously we didn't want this for him but he is very happy and loves nothing more than snuggling up for cuddles and playing with his big brother. My thought is that if he was going to have no quality of life he would have left us that 1st night - thank god he hung in there!!!

Love and hugs to you and your beautiful boy and please feel free to message me anytime xx

Tricia - posted on 01/29/2009




hi hun!!

i do know what your going through and how you feel.


Teigan was born at 26wks and she weighed 1lb 12ozs, 2 days after birth she had a grade 4 intraventricular heamorrage and they said that she wouldnt survive but my angel held on and survived. they told us that she would be a vegetable and that she would rely on us for everything and she wouldnt speak.

At 38wks we bought her home weighing 5lbs 5ozs and when she was gestationaly 6wks old we had to take her to kings college hospital to have a shunt inserted in to her head as she has hydrocephalus, then at 1yr old we were told that she had 4 limbed cerebal palsy and at that moment my world was turned upside down and i had never felt so alone.

Teigan is 4 now and will be going to a mainstream school in september because even though they said she would never talk now we cant get her to keep quiet lol because she talks to much ( the hospital got that wrong ) and even though she only has half a brain she is a very clever, bright little girl and i am very proud of her. i always said to people that if she couldnt walk i hoped that she would talk so she could tell me if anything was wrong and she didnt feel well.

Teigan too is a very happy lively little girl and she only cries when she is not well and she has never asked why she cant walk, she has just been diagnosed with having asthma and she has flu jabs every year.

we to are glad that we didnt let her die.

please if you ever want to talk i am here ok hun.

take care

tricia xoxox


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Laura - posted on 02/01/2013




Im glad hes a happy boy. honestly im so scared what might happen to my daughter jisselle n the next few years... she also had quadraplegic cerebral palsy in all four limbs doesnt walk or sit on her own it really hurts me to see that she cant really use her arms.. n i wonder will she ever b able to hold her bottle. or wen will she actually stop wearing diapers it hurts me everyyime i take her to doctor appoinments it makes me sad... she is schedulef for a g tube n gundo n gor her to get her tounsils and adnoids removed.. im so scared i feel like canceling but i kno she needs it.. but the ent s so sure that after the surgery she will need a tracheyostomy n i dont want that... it makes me cry having to talk about her issues what helps u b so strong n share everything? R u attending support groups or did u ever?

User - posted on 01/03/2013




This story made me cry and feel so sad but happy that ur boy survived at the same time. Praise jesus

Brittany - posted on 01/22/2012




Mathew was finally released from the NICU after 16 months. He ended up getting a trach and sent home on a home vent. He is almost 3 now and has been home for 1 year and 5 months. He is off the vent already during the day and only on O2 at night unless he is sick then he is back on the vent. He isnt walking yet but trying and he can crawl all over the place. He is starting to say some words but with the trach it makes it hard. Hopefully he will be getting the trach removed this year sometime. His heart is perfect and his brain is perfect. he has no signs of damage. He is a really strong boy and hasnt been admitted for anything so far since he has been home. He is doing great.

[deleted account]

Hi how u doing my name is Karina and i also had a premature baby, i had him when i was 27 weeks pregnant and he weight 2 pounds when he was born. He was in nicu for three months and weight 5 pounds before got to take him home right now he will be 21 months on the 27th and still has problems he requires oxygen at all times has difficulty speaking and hearing will be getting surgery and gets sick a lot.

Christy - posted on 11/21/2009




So many miracle babies! My little guy was born at 27 weeks. 2 lbs. He didn't seem to have any problems but the asthma. Now, at the age of 7, he has come up with Sensory issues--clothes too tight, things are too loud (I had to unplug the fish tank because it was driving him crazy) His doctor said she sees that in premies. Has anyone else had to address these issues?

Annie - posted on 11/19/2009




what an amazing story, he is a true miracle!!! my little boy was born at 29 weeks and suffered alot of set backs too, he has got cerebral palsy but is a little fighter too and is such a happy little boy

Felicia - posted on 11/08/2009




I know how you feel my son was bron at 24 weeks and i was not sure if he was going to make it, he to was on a vent and c pap it seemed like as soon as he got well he would have a set back. so i understand the pain I thought i was alone I prayed day and night plus on top of that i had to deal with my mental state ppd, amari is the smartest baby you have ever meet, i am just glad i have him.

Janet K - posted on 11/06/2009




I had triplets 18 years ago, my son trenton (TJ) is our only surviror. He has had lots of PT, OT & Speech. We were told that he would never sit-up, crawl, wsaid that is not acceptable. They taught me how to do therapy and I did therapy for 20 minutes 5-6 times a day. He had removable shoe inserts, botox shots in his legs, removable casts a when he was 5 or 6. nothing worked, so he had the heel cord lengthening surgery. He then went into a wheel chair for a couple of months.To look at him then he went into AFO braces for several months, then walking, He continued to go to OT and PT for several years. He is now 18 is in acting school, lives on campus, walks every where. He struggles with leg cramps, hand tremors, he is dyslexic and his stroke was in the front of his brain . He takes medication to help him sleep, gets muscle cramps in his legs and has several papers. He is a great young man, he struggles in the acting college with lots of homework. He greived for his brothers on their 18 and 19 birthday. We never expected him to graduate high school and he did. It was very hard to get through all of that, but he did and he is so talented sometimes good to look at this .

Joyce - posted on 10/30/2009




Oh yes, absolutly, there are preemies who continue through life with their disabilities in place! ANd likewise, their are many who overcome some of them.

Congratulations to your family on the birth and strenght of your son's character! May you have many more.

My daughter, Christina, in the pic here w/ me is 23 today! She was also 25 wks gestation, but weighed 1.8 lbs and in leve 3 nicu for 6 months.

She suffered some of the problems that Adam went through, but no MRSA and no brain bleeds. She had 3 rounds of NEC, 44 collapsed lung events, numerous surgically implanted central lnes, apnea, BPD, collapsed veins and arteries, ROP/RLF and so many more.

What I can tell you is this: the BPD seems to have caused her asthma bc of the tightness of the scar tissue; the NEC seems to have caused her some intestinal issues like frequent sever constipation; ROP/RLF actually resolved itself at a time when a screwball Ped Opthamologist insisted she was a 3+ in one eye, a 4+ in the other, no, wait, a 4+ and a 2+, oh no, wait again, a 4+ and a 4+...resulting in a frantic "we nust do cryosurgery immediately or she will definitely go blind."

Our judgment at that time was that since cryo was new w/ no know results and a 50/50 chance of success, (they only worked on 1 eye), we decided to call in another doc for a sec ond opinion and insist the 1st doc stay far away from Christina. He encouraged us to wait and we found out abt 1.5 yrs after her hosp release that the ROP/RLF reversed itself!!! probably one the happiest days of my life. Christina wear glasses...know waht? So does the whole world!

Anyway, she started growing up w/ some learning disabilities: Central Auditory Processing Disorder; a severe Math disability (still can't do the basic 4; forget the rest, dont even try); has tendencies toward Asberger's Syndrome. Big deal! Still she graduated from a HS w/ Honors (GREAT place in Central FL called PACE-Brantley Hall for mild LD kids) and went on to comm college and ultimately to cosmetology school; just took her state boards this week. She passed the practical and came dangerously close to passing the written; she will try again in 30 days!

For Thanksgiving, she will be taking her 1st trans-con flight to visit my brother's family in CT (we live in CA) and see the Macy's Parade.

There is no way to tell where a child's path will go, but I can tell you this: it has been 23 years and every time I look at Christina, I relive her life. We brought her home and were met at the front door by PT, OT, ST and Spec Ed therapists who came to the house 5 days/week. Thus began the intensive, intrusive intervention that went on for about 15 yearsbeofre hse everhad a summer off (couldnt bc she would lose any learned skills). And so, we lived w/ Christina fearing borrowed time and whatever God's Grace would send her. But, like Adam, she is also strong and today, like all days, I see Christina's whole life before me again and I cannot even believe she has come so far, no matter what kinds of tools are missing from her tool box.

Adam is 8 and he will continue to amaze you every single day of your lives together. I promise.

Alda - posted on 10/29/2009




Your stories had me in tears. My twins were born at 28 weeks by emergency c-section due to abrupted placenta, knot in umbilical cord and footling breech. My one little one had a perforated NEC with ileostomy and stoma (reversed after 3 months), and also PDA ligation at Great Ormond Street Hospital. She stopped breathing 15 times in one night. They are now 14 months (9 corrected) and are doing so well, starting to walk. This experience was bad enough for me, I can't even imagine what you guys are going through. Well done to you and your little people for being so strong and keep the lights shining bright :)

Brittany - posted on 10/24/2009




My son was born at 24 weeks. He was put on the vent and stayed on it for a long time. When he finally came off he was put on c-pap for awhile then back on the vent and then back on c-pap and then finally on nasal prongs and at a week from coming home at 4 months actual he started getting bad, he was put back on c-pap and in 12 hours back on the vent. THey found out he had pulmonary hypertention because of his BPD and it made his right side of his heart enlarged and that was making his left side fell. They told us he wouldn't survuve and it was up to him and God now. They put him on some new medicines and he is now six months old and finally coming off the ventilator and his heart is functioning normaly now although he is still in the NICU he is doing good. He also has a grade 4 IVH on one side and ROP and BPD and sezures.

Sharla - posted on 09/28/2009




Your story made me cry. It is definatly a beautiful story and I will pray for little Adam! He and my guy have the same birthday! :o) Go ADAM! My son, who was born at 31 weeks, was diagnosed with Cerebral Palsy while in the hospital. He had a lack of axygen 2 weeks prior to them ripping him from me. And sometimes, that's how I feel they did it. He was born stillborn & they had to resicitate him & after 10 minutes they got a spontanous heartbeat of 120 (which as we all know, is still pretty low). He had a Grade 1 IVH. They told my husband & I that Marqus (our son) would not live the first 24 hours of life, but that he did. And when he surpassed that 24 hour mark, they told us he had a week... they didn't think he'd go a week. But, my son is now 7 months old, 5 adjusted.

Belinda - posted on 09/22/2009




ur story made me cry adam is so good. my 32 weeker was born due to plancenta perv and a toxic womb he was in NICU for only 4 weeks but he was born with TOF and a a clapsed lung at 10 days post op but other then that he is doing really well

Roxie - posted on 09/21/2009




You are truly blessed. I had my son at 33 weeks due to a placental abruption. I had emergency c-section. When my son was delivered they had to revive him. Immediately after he had seizures and had to be transported to the NICU where he spent 3 weeks. He was on a ventilator for a week. He is still having seizures. He is taking trileptal, topamax, and keppra. He also has qudrapelgic cerebral palsy. In 2006 had staph infection in his blood. He is taking baclofen. In 2006 he developed RSV. He spent 2 months in the hospital. He was in ICU for a month. That was when the drs told me he had cerebral palsy and hydrocephelus, but said that it wasn't enough fluid to put in a shunt. They also thought he had a stroke due to his sickle cell disease, but thank God he didn't have a stroke. In july of this year he experienced a series of seizures where the drs had to give him a number of meds to stop it,but in the process he stopped breathing due to all of the seizures meds they had given him.He was put on the ventilator. In August of this year he developed pneumonia and Flu A at the same time which I didn't know that could happen at the same time. By him having sickle cell he developed acute chest syndrome. Was on the ventilator a week. He had four IV at one time.My son has cerebral palsy, sickle cell disease, asthma, and seizures. We are truely blessed with the wonderful miracle babies we have.

Caroline - posted on 08/29/2009




I understand the challenge of having a child with learning & developmental problems. My daughter was born 9 weeks premature & suffered brain damage - Cerebral Palsy. She had many challenges.

I found a new wellness technology that gave us amazing results in a very short time.

My daughter's story - audio http://www.carolinemangelsdorf.com/audio...


Email: mango2@iinet.net.au

Tammy - posted on 08/23/2009




im so sorry 2 hear all that hope he gets better my little girl was only 5 weeks early & ive just found out she has torticollis its do with her neck

Raimey - posted on 02/20/2009




My son was born 10 weeks early and was diagnose with pvl..periventricular leukomalacia.  We won't know how it will affect him til he is around 12 months old.  He is 6 months old now and has some weakness in his arms and neck.

Sarah - posted on 02/18/2009




ur story is very amazing! ur boy has gone threw so much since hes been born. hes really strong.. glad hes doing so well.. hes a great fighter for his life..

Eliabeth - posted on 02/13/2009




Hi to everybody, and  thank you all so much for your love, support and best wishes, i am not am overly religious person, but i do truely believe that all us parents of such special babies are gifted our children as God knows we are the right parents to take care of our child, and He would never bestow us with more than we can cope with, whatever the long term problems are babies have, they all stayred on this earth for a reason.

They may never be scientists, or olympic champions, or even leave home, marry or have kids of thier own, they are not here for that, they are here to teach us, and others about love, strength, compassion, and faith, in ourselves and in others, and also to believe in Miracles. xxxx  from lizz and Adam.

Darcy - posted on 02/13/2009




Wow, what a heartwrenching story you have! God Bless Adam and your family! How terrifying all that must have been. I cannot imagine.  Our experience in the NICU is nothing to what Adam and your family have had to endure.

Melanie - posted on 02/11/2009




Let me first say God Bless You!!! I don't know what your going through but I do know your miracle is just that a true MIRACLE!!!! My son was born at 31 weeks, and was born at one of the best rated hospitals in the United States, he was only on ventilator for a couple hours and then breathing on his own, he had a few minor heart issues, some feeding issues, and minor case of ROP, but by 6 weeks he was home. Now at 18 months however we are finding that he has more problems than were realized. He doesn't walk let alone stand up, he is being sent to a neurologist on Monday to find the cause of this. maybe Cerebral Palsy mild case they say but nothing is known for sure just yet. I'm telling you this because had it not been for my faith in God, I wouldn't have made it through this. So I just wanted to say God Bless you and I will be praying for Adam and your family.  God Bless

Stephanie - posted on 02/04/2009




What an amazing story. Your little boy is quite a fighter. The only thing I found solice in with my son who was in the NICU for 3 months ROP, IVH grade 3 etc. There was one moment where it just hit me and I finally put all of my faith in God. I'm not sure if you're a beliver but that was the only thing that brought me through. And by the grace of God he's doing incredibly well.

I wish you all the blessings in the world.

Kathleen - posted on 01/31/2009




Wow! Adam is a real fighter! I am so happy for you!

I have triplets who were born at 34 weeks. Fortunatley, they are all doing very well!

I am praying for you all!

Alisha - posted on 01/29/2009




I have no clue as to what your going through, but I thank God every day for miracles such as this.  Your child is a true blessing from GOd and I am sure he has big plans for Adam.  I am so glad you stuck beside your little fighter and he is such a miracle.  I will be praying for you and your family for another blessed day. 

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