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Thread: Premature baby just diagnosed

  1. #1
    Join Date
    May 2004
    Posts
    5

    Premature baby just diagnosed

    I recently gave birth to boy/girl twins 9 weeks premature. Given that most prem babies have every diagnostic test known to man (!), it was noticed early on that my son's heart seemed to be in the middle of his chest. Further chest X-rays showed that he has a number of hemivertebrae. The X-rays were sent to a paediatric radiographer, who both confirmed the suspected diagnosis of congenital scoliosis and confirmed that she did not believe it to be part of any wider syndrome (e.g. VATER syndrome??).

    Noah did also have mild hydronephrosis of the right kidney (which showed up in my ante-natal scans - I had many of them, as he was also growth restricted in utero) and was prescribed antibiotics soon after birth. He's since had a follow-up scan and the right kidney is no longer dilated so the antibiotics have been stopped.

    He has two holes in his heart: a patent ductus arteriosis (quite common in prem babies and expected to close on its own) and a ventricular septal defect (only a moderate one and again expected to close on his own). He is asymptomatic for both. He has a follow-up appointment with a paediatric cardiologist in a couple of weeks.

    Due to his prematurity and very low birth weight, he required help breathing (although never needed mechanical ventilation) and still needs some supplemental oxygen, so has chronic lung disease, which will get better as he grows and the lung tissue repairs itself.

    He's still in hospital (now at equivalent of 41 weeks' gestation) and when he comes home we will be sent an appointment to see a paediatric orthopaedic surgeon at a specialist children's hospital.

    I suppose I am just feeling a little daunted at what his future holds. He is likely to continue to suffer, particularly with his lung issues, from complications of his prematurity and can imagine that as soon as he's getting over those, his scoliosis will need attention.

    Anyone been in a similar situation with their child?

    Oh yes, and, quite coincidentally and something I forgot about, I recently found the results of a chest X-ray I had when I was 18, which found that I had mild thoracic scoliosis concave to the left. Funnily enough, it's really clicked with me that I tend to prefer lying on one side (as does my son in his cot!) and have suffered neck tension mainly on the left side. Mine is presumably idiopathic scoliosis but I think I read somewhere that the tendency to scoliosis can be inherited???

    I guess the silver lining is that, due to his prematurity, all these things have been picked up very early...

    Lisa
    UK

    P.S. Am attempting to post a photo of my beautiful little boy...

  2. #2
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Lisa - your little man is adorable! I'm sure you are very busy and exhausted with twins. I hope you continue to enjoy their bright personalities and the love they bring to your family.

    My Braydon was born with severe scoliosis and other anomalies that fall (somewhat) into the category of VATERS/VACTERL Association. Your little man sounds like even tho he's doing very well, he still qualifies for a VACTERL title, but is resolving some of the problems on his own (i.e., the heart and kidney issues). There is a GREAT messageboard for parents of VACTERL (and related anomalies not necessarily labeled VACTERL) found here:

    http://www.vaterconnection.org/megabbas

    I know several on the board who have twins, one was affected by these types of anomalies and the other healthy.

    The scoliosis issues will only become a problem for your little man if the curve progresses. Sometimes children have multiple hemivertebrae issues that counter-balance the spine, making it relatively stable. When you meet with the orthopedist (make sure its a PEDIATRIC ortho who specializes in spine malformations) let us know what they recommend. Most often, the recommendation is observation (i.e., xrays and checkup) every 3-4 months until age 2, then every 6-12 months after that, as long as the spine is stable. There are invasive procedures to keep the lung capacity optimal, but I won't go into details about that right now. Your little one is doing well gaining weight and getting ready to come home to your family. Keep us posted!
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

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