Hi there,
My daughter found out that her baby had this (duodenal atresia/double bubble - the appearance of two stomachs) at 30 wks of pregnancy. She was having a 3D scan at Window to the Womb.
The sonographer referred her straight to her local hospital. Her stomach was really painful, her skin felt stretched and tight, because she had polyhydramnios. She had noticed that she had massive amounts of huge baby movements and she now thinks that this was due to the baby being uncomfortable/in distress. Her stomach would clearly show the baby moving from one side to the other and she would video these episodes regularly. The baby was also measuring small - she was told that the baby had a 40 percent chance of having Down's syndrome.
She had an amniocentesis two days later - the initial results 8 days later were clear. At her next scan she found out that the amniocentesis damaged/collapsed the membranes around the baby. She was told that as a result of this she could go into labour at any minute. She got the second set of results from the amnio 16 days after the test which were also clear. She was told to expect the baby to be in hospital for two weeks after corrective surgery. She was told to be prepared to go into labour early, she was shown around NICU and she was told she was not to worry as babies past 33 weeks gestation generally did very well (she was 33 wks when she visited NICU).
She had regular scans from 30wks (two a week) and at one of these scans it was noticed that she was contracting. Just after the scan, as she got off the bed, her waters broke spectacularly. She gave birth that day at 34 weeks. Her 'active' labour, where her partner could join her, (first Friday of lockdown) lasted 2 hrs. Her daughter weighed 3lb 15oz. The baby was well enough to spend an hour with her parents before being taken to NICU. Baby had surgery 12hrs after birth. She seemed to be recovering extremely well afterwards as she did not need oxygen - just a feeding tube.
Four days after surgery, a day after being transferred to SCIBU, it was found she had sepsis and after that she inhaled stomach contents and developed a nasty chest infection. She was in NICU another 5 weeks after that. She was on cpap machine for three weeks.
My daughter was shown how to tube feed and later started to breastfeed (she expressed colostrum and milk for the tube feeds ). She spent all day in NICU but had to go home every evening. Her partner didn't hold his baby until she was six weeks old after she was discharged because he wasn't allowed in NICU.
She was still on oxygen for another month after going home. She is now 24 weeks old and has just gone into 3-6 month clothes - they look huge on her. We don't know how much she weighs but think about 14-15lb. She is still exclusively breast fed. The aftercare during lockdown was 'ropey'. Mainly phone calls from midwives, health visitors, consultants. She saw the surgeon last month and has another follow up in three months. A specialist nurse was supposed to visit two/three times a week but would ring up and ask my daughter if she thought she should come or could she manage ? Due to lockdown there was very little support which added to everyone's anxiety.
All appears well with baby - there appears to be no problems with the stomach (normal amounts of poop and gaining weight). Initially she was putting weight on very slowly but as time went on she gained creases and rolls just like any other baby. She is very close to sitting up independently, she chuckles, puts everything in her mouth, has a favourite toy, is very chatty in a babbling way and is teething. She is meeting milestones. She seems incredibly strong for her size, has held her head steady from a very young age and will stand up holding onto the sofa.
From birth she has had reflux and has colic. She has prescription medication for this. She has not slept for more than three hours at a stretch and that is rare (usually wakes several times during an hour's nap). My daughter is often exhausted as some nights just gets three 20 min naps. When she had her six week check (eight weeks after birth) her GP said that I could shield with them which I did to ensure my daughter got some longer sleeps. She realises she's very lucky to have her daughter as she was very poorly (touch and go) with sepsis. She's been having CBT sessions weekly (online) because of some horrific things she witnessed her daughter suffering during the five weeks in NICU, choking, oxygen desaturation, lumbar puncture etc. She says hearing certain sounds remind her of the monitors in NICU and make her panic. She's dreading putting her baby into her own room so will put that off a little longer - she's still anxious about choking due to reflux.
My daughter's baby had complications after successful surgery - I really hope that your baby doesn't. At least you know someone has been through this and come out the other side. The doctors are pleased with progress and say there will be no further issues.
My beautiful granddaughter is a little star and a little cutie.
I wish you all the very best.
Don't hesitate to ask if you have any questions.