Featured cherub of the week is CDH survivor, Sherman Soh. Sherman is the son of Linette and Sebestian. Linette is CDH International’s Singapore Ambassador. Here is what Linette had to share about her son:
“We found out about Sherman’s RCDH diagnosis at 19 weeks gestation. On Valentine’s Day 2017, we scheduled an appointment with the doctor to find out about our baby’s gender. What started out as a routine anatomy scan turned out to be one of the darkest days of our lives thus far. I can still vividly remember the stoic expression on our sonographer’s face throughout the session. The atmosphere in the room was really tense and she flatly refused to comment even when we probed further. At the end of what seemed like an eternity, she simply told us that we were expecting a boy and that she would have to speak to our gynecologist before allowing us to leave the clinic.
It was only at our gynecologist’s clinic that we truly realized the extent of our baby’s condition. Apart from being a right-sided CDH, our baby’s liver had already risen up into his chest cavity at a mere 19 weeks gestation, greatly impacting developments of his heart and lungs. Based on preliminary findings, he was given a 30% survival chance at best. Out of goodwill, our gynecologist contacted one of the best pediatric surgeon in our country. Our last glimmer of hope took a huge setback when that very surgeon cruelly told us to “forget about trying”. We must have seen about 10 other doctors in the span of the next 2 weeks. Sadly, most of the doctors were pro-choice and focused entirely on walking us through the abortion process more than other possible outcomes if we were to proceed with the pregnancy. As we were obviously hesitant about making the call for an abortion, an amniocentesis was arranged in order to identify secondary genetic conditions that would make the option of abortion even more compelling for us. We felt really lonely in our pregnancy journey. It seemed like an abortion was the only “right” choice in the eyes of most doctors we have spoken to.
Our amniocentesis results came back negative for all significant genetic conditions. We felt that this was God’s way of telling us to give this baby a chance at survival. After all, who are we to make this call to end a life? We decided to leave the option of abortion out of our minds entirely. The next 2 weeks were spent talking to doctors abroad, namely Dr. Kays from Johns Hopkins in USA (for the management of our baby’s RCDH) and Prof Kypros from The Fetal Medicine Centre in UK (for the FETO procedure). Both doctors were willing to accept our case. Just as we were starting on necessary logistics pertaining to our move abroad, we faced another huge hurdle in our pregnancy, seemingly robbing us of our hopes entirely. I was admitted into our local hospital for preterm labor and was placed on strict bed rest due to active contractions that were spaced 3 minutes apart. Our weekly ultrasounds did not look optimistic too. Apart from measuring small for his gestational age (not compatible with ECMO), our baby’s bowels and spleen had also risen into his chest cavity. Our baby was predicted to have less than 5% survival chance.
Doctors at the hospital did everything possible to delay my labor progression. We made it to 38 weeks + 2 days gestation and proceeded with an induced normal vaginal delivery. It was a daunting labor experience with over a dozen doctors, nurses and technicians in the delivery suite. When Sherman was born, he did everything contrary to the doctors’ expectations. They were initially prepared for him to be a stillborn, if not, appear purplish at point of delivery and definitely unable to let out any cries due to his severely impacted lungs. Having said so, they still proceeded to intubate him immediately after birth due to uncertainties in his lungs’ capability and had him pushed to the NICU. Further examinations showed that he also had mild-moderate ASD and VSD.
Sherman had his hernia repair at day 6 of life and the surgery lasted for 6 hours. He was subsequently extubated at 1 month old after one failed attempt and then gradually weaned from HFOV to CPAP. Apart from the expected respiratory concerns, Sherman also faced feeding issues due to weak suckling. Having said so, his progress was astonishing especially since our country has not dealt with a RCDH case in many years (most fetuses with CDH are usually aborted here).
As Sherman’s respiratory needs stabilized with time, we were able to bring him home at 68 days old. He was discharged on CPAP and an NGT. Throughout this time, he has undergone a second hospitalization and surgery at 4 months old due to pyloric stenosis (a condition unrelated to CDH), overcame pulmonary hypertension and experienced two cycles of common cold which was dealt with at home. Apart from GERD and feeding aversion, he is slightly lagging behind in terms of speech and achievement of developmental milestones. We have since arranged home-based therapies to try to help him cope with the lags.
Looking back on our journey thus far, this baby has definitely been a blessing in our lives. Sherman turned 2 years old in June 2019, he has taught us much, much more than what we have experienced in our 30 years of life so far.
To all other families coping with CDH like us, always bear in mind that “with hopes, the odds don’t matter.” You are never alone.”